Changing Names and Hearbreaking News for Geeks

I found out from Twitter that Sara Morishige just got married to Twitter's c0-founder and chairman, Evan "evhead" Williams. Poor hubby. I don't think he'll be that blue about the whole thing though because he's been into Niniane lately.

What I'm wondering about though is if Sara will find it easy to transition to Sara Williams or if she'll do the hyphen thing like I sometimes do. I do the hyphen thing not because I don't want to use my hubby's name but I feel a little disloyal to my clan whenever I drop the Tasarra from my name. It's bad enough that the Balagtas, my mom's maiden name, has to be dropped. On a more practical note, I also use the hyphen because it makes it easier for past acquaintances to recognize my name on emails. If I use my new name some might go...Hannah who?...and then mark me as spam. If I were Sara I'd use the hyphen (Sara Morishige-Williams) just because it looks and sounds a lot cooler than plain Williams, which makes her sound like a tennis player (which isn't really bad either if you think about it). Anyway though they'll never read this. Congrats to Ev and Sara.

Sara Morishige in Vegas last year. Photo from Sara's Flickr.

Sara and Evhead in St Peter's Square. Photo from Evhead's Flickr.

Posting entries like this makes me realize how much I have turned into Mark's wife! How in the world would I know about these people otherwise?
*******
Update: Here's the link to Mark's short post on Sara and Evhead. I couldn't believe that was about 3 years ago!

Early Birthday

Got my first birthday card a few days early. I know it's from Samsung and I got it because of our aircon's warranty but it still cheers me up. It cheers me up enough to link to their website! I guess this means that their oh so obvious marketing technique works. Though some people might not like getting emails like these I actually love getting cards from brands I really do patronize. Last year my birthday card was from my bank (it wasn't an e-card but a real one) and I kept it like it was from a friend. LOL. I think I've lost it though sometime during our multiple moves. I wonder if they'll be sending me one this year. So silly but I think I'll start collecting commercial cards or whatever you call them. I'm serious about this. Hmmm. I wish though that they sent me that phone instead of the e-card. ^_^ Oh well. Happy advance birthday to me!

Cold Hands...Goodbye

Warning: Toxic post. Not for the underage or those feeling sad right now. Do not continue if you don't want to see an ugly side of me.

.

It is very dangerous when my hands get really cold and clammy. When my stomach starts churning and I feel like puking till there's nothing left inside. It's even worse when the cold start leaving and is replaced by dead calm. I know it isn't real calm but simply the eye of the storm. Very few people in this world has seen me in a cold rage because I don't permit it to be seen. But this is the part when it is starting. I need to tell someone to fuck off or get a drink or scream or do something stupid before the total calm arrives because then it turns me into a frigid rock. My hair will start to fall and I will smile while I rage because of the hurt.

Like I said it is rare that I hate people but when I do I get really passionate. I don't know if this is even hate. All I know is it is rage. Rage as a result of hurt. Whose fault it is doesn't matter. For the first time I want the world to know how much rage there is inside me. It is much better to let go of the rage instead of holding it in and hurting myself because I kept it in too much and now need to feel something...even if just physical pain. I refuse to hurt myself anymore. Let the world know I am mad. Let the world know I am not not nice. Let the world know the duplicity that lives in everyone lives in me. I don't not care. I do care. I do care to make sure I take care of myself this time. I am mad.

Disclaimer: To my readers do not take any of this personally. I intentionally erased a lot of portions that was originally going to be placed in this entry because I know that words are powerful and that it is harder to take back words said in the heat of the moment that actually uttering them. I will lash out at the world in general but never give specifics. I will accept words of encouragement or damnation but not reply to any questions.

I will try my best not to post stuff like this again. Drama from me is corny but acceptable. Anger is not too acceptable but let it work like a band aid till I can call the helpline on Monday. Wow. Blogging sure is therapeutic. I feel a lot better. I am no longer raging mad but feeling more disappointed. I just needed this off my chest.

Pouring my Heart Out

I feel lost. I know I'm not lost but I feel like I am. Or maybe its just that I know that I've lost some thing(s) and I'm at a loss trying to figure out how to get them back. Lost and tired are the perfect words to describe me right now. I am lost and tired. I just want to give up, not on life (that's way too much melodrama) but on that mysteriously lost thing(s). Maybe giving up is the right thing to do because there are certain things that no matter how much you will it, it just isn't up to you.

I need someone to talk to but right now I don't think that a friend will do. I am tired even of my friends. Sorry my dear friends I do love you so and I know how much more you all love me more (isn't that just egotistic? ^_^) but there are things you just don't pour out even to friends. Sometimes a well meaning and compassionate stranger is much better (no I'm not talking about a one night stand!). I wanted to call a counselor but the free ones are available weekdays only. That sounds so lame. It is really lame to find yourself reduced to reaching out to some unknown counselor and to whispering your problems on the phone anonymously. At the same time I am not stupid. I do recognize that if it was another person who did that I would tell that person that it is the right choice to ask for help. What makes me so special that what would be good for others would be lame for me? Nothing. I have come to realize that there is nothing that makes me special in that way.

This is not one of my pityfests though it may come across as that. Contrary to that it is a sign that tired as I am, I'm not too tired to take another step to help myself. I want to give up on something(s) but I am not giving up on myself. In fact I may not be more special than other people who are as lame as I am but I am special enough for me to do everything to make sure I don't get depressed again. Come Monday I will be calling the helpline. If I don't get any good advice I would at least be able to pour out my thoughts and feelings without hurting anyones feelings and without dragging anyone else into the situation.

Blades of Glory

Watched Blades of Glory last night AND this afternoon. I have never had such a good laugh in years! DVDs coming out in August. Unless you have Bitorrent you NEED to buy the DVD because you just won't be satisfied seeing all their routines just once. Must go and watch again!

Champion a Cause by Voting at 25Charities

I know my blog is starting to sound like a charity blog and reading plugs about this thing and that isn't really that enjoyable. However, I actually like that this is happening since it makes me feel good. Everyone knows that getting involved in charity makes you feel good. Plus, of course, it does help educate folks and maybe save a life or two. If that isn't worth boring a few readers I don't know what is.

Anyway FSMA sent me their newsletter and it highlighted this website called 25Charities. 25Charities has just launched a book entitled "World Champions". Since I'm feeling a bit lazy and don't want to summarize what I read in the website here's what the book is all about.

"The Coffee Table Book
Published by Window View Publications, “World Champions: 25 Charities That Make Our Home a Better Place to Live” is a hard cover coffee table book which features the missions, pictures, and heartwarming stories of 25 charities, and the impact they have on society."

The cool thing about the site is that you can support the charity of your choice without even needing to buy the book, which is great for those who just don't have the budget but really want to feel like they did something to help. All you need to do is vote for the charity of your choice. The charity that wins will get...

1. 20% of the gross sales from all books sold during the promotion dates.
2. Residual Payments on Future Sales: 25% of gross sales from all future books sold (once the promotion ends) will be donated back to the charity with the most votes for as long as the book is published.

Quite obviously I am rooting for FSMA (Families of Spinal Muscular Atrophy). For those who do not know why you can read the story on how Sam was first suspected and misdiagnosed as having SMA Type 1 by clicking on this link and how we found out a good (or actually really hellish) few months later that Sam actually has PWS (which is the best news ever...after SMA that is) by clicking here.

I do know though that all the charities listed there are really good causes so if your heart tells you to vote for something else what can i do (except stalk you on the net is I find out ;-> ) ? So please do spend a few minutes of your time for something worthwhile.

Here's what the book looks like BTW. Oh and in case you do have money to burn but isn't interested in the book you can gift it to many anytime! ^_^


"No act of kindness, no matter how small, is every wasted." - Aesop

Sam Update

Sam has been showing some progress lately. It's really a blessing since I've secretly been worrying and feeling a little down because of all the medical complications and his way too slow progress. Since Friday though he's been amazing us with some significant (at least for him it is) improvements. Latest developments include:

1. Ability to tilt forward while sitting until his head reaches his feet and then stretch out a bit so he can lie face flat on the bed. He still gets all muddled up with this one though and ends up with a leg or an arm stuck underneath so I need to push him a bit to help him get going.

2. Ability to hit his telephone toy with the receiver to get it to make sounds. This is a really big deal because it means that he's learning to use tools. The funny thing though is that sometimes he hits the back of the phone but since it's face down the buttons underneath get pushed and it still makes sounds.

3. Even better than number two was when Sam put his tiny fingers together, pointed it towards the phone toy and then tried to push the buttons with his fingers! He finally understands that you are supposed to hit the buttons for the phone to beep and say "Hello!" and "Goodbye"! Woohoo! I've been showing Sam how to play with it since he was 4 months so it really is rewarding to see him playing with it on his own. It's really a good sign too that he is finally developing problem solving skills.

4. And last is his overall behavior. He now knows how to complain by making cute shouting sounds when he's uncomfortable or needs attention. This is really good since he never used to complain even if his nappies are really soaked or full of poop. But though he knows how to complain more he's been very good during the last two therapy sessions and cried very very little and almost never complained. It's really surprising since we've been absent for more than a month due to his bouts of pneumonia. He is so much more alert and active now. I'm so proud of my boy.

And now... pictures! The pictures were taken this morning before Mark left for work. Notice that on the third one Sam is sitting very straight and is slightly leaning forward. His balance is getting really good! ^_^

Still asleep. Look at those arms! I'm glad he's getting thin.

Great wake up call from Mommy and Papa.

See me sit. Hindi pa ako nasusuklayan!

Hunger in the Eyes of a Child with PWS

Hunger exists in this world. I have no idea how parents who are unable to feed their child feels. It must be gut wrenching to see your child starving and just not having anything more to give. This fact is something the world knows about... and it is our crime that this kind of hunger continues for there are resources to help those in need.

The hunger that personally hounds our family is of a different kind though...yet it is equally as heart breaking. How does it feel to let your child go hungry when there is food in the pantry? This is something I don't know yet. The time is coming that I will know though and it is what scares me about PWS the most. Some days I think Mark and I live in denial about how it will really be when "the hunger" arrives. I keep on hoping it won't come or a cure will be found before it happens with Sam. A lot of parents with PWS must have felt this way too. A lot like us dread it. And now it has arrived for a little girl named Juliette. Here's an email from Juliette's father, George, that makes it clear to me that it too will happen to my son... unless a cure is found fast. Oh God please let there be a cure...

Over the weekend, Julie (almost 6 with PWS by UPD for those newcomers) and I had a chance to play a bit. It was about 10AM. Julie had had her breakfast as always at about 6AM. Then a little snack as always at 9AM. Now it's 10 and we're playing a bit and she says "Daddy, is it lunch time yet?" I answer "No, Julie. Not for a while yet. But you just had a snack, you're not hungry again are you?" "Yes I am, Daddy" she says, then adds "Daddy, I always hungry." :>( Great. "Julie, can u use your smart brain to tell your tummy to wait a while, that it's not time to eat again yet?" "I try to, Daddy. I always try but nothing will work."

And an even more poignant one from George again...

Our teenager has a summer job as Baskin-Robbins. Most nights when she works she brings home a cup of ice cream for each family member, special as ordered for each of us. YES - I can hear you all screaming now. The only excuse I can offer is that Juliette's is always no fat or low fat frozen yogurt. She loves it, it aint half bad calorie-wise etc and she doesn't really know the difference right now between it and ice cream. So, one of the deals with her re food is she gets a small treat after lunch and one after dinner. I mean small. Typically it'll be ONE sugar-free cookie. And she is happy as a clam to get it. Well, when we have the FroYo for her, she'll have that. Whitney always takes some out of the little cup and gives it to Julie. Usually 1/3 to 1/2 of what's in the already small cup (holds about one scoop.) So it really isn't much. Julie is always happy about what she gets. Never complains or asks for more. So last night I was on treat duty. There was a new full one-scoop cup of froyo available and I gave it to Julie with a spoon and said "How much do you want to eat?" She said "Half" I said perfect. You eat half and I'll put the rest away for tomorrow. I leave her to it and come out to the computer. 10 mins later, I go in to check on her. She enthusiastically holds the cup out for me to see and there's still more than half left. I say "Great job. Go ahead and eat a few more bites and then put it in the freezer." I left it for her to do. I want SOOO much to trust her. About an hour passed. I had forgotten about it. Julie came out to lay on the sofa where I'm working. After a while she says "Daddy?" "Yes, sweetie" I answered. "Daddy that ice cream not working for me". she says in an apologetic tone. "What do you mean?" "It not working for me" she repeats. My heart starts sinking and I go to the freezer and it's not there. I find the empty cup in the trash. She ate it all. I didn't get mad at her (how CAN I?) I came back and she said "I put it in the trash" "I know Julie I saw it there. You promised me you would only eat half. WHat happened." "I tried Daddy I really tried but it not working for me." And she was sooo sad. She really felt terrible. She then said "I cant do it myself. I need help" She really said that. I told her next time I promise I will help her. So I guess I learned a lesson that Whitney and probably most of you already have learned. I learned it from the mouth of my almost 6 year old. She (and probably all folks with PWS) is aware of the compulsion to eat at some level. She does try to ward it off and fight it, even at the age of 6. But she cant do it alone. I need to help her. I need to be smarter. I need to encourage her and be there every time when she needs help. Like any of our children, only much more so. She wants SOOO much to do it herself. But sadly, she can't. And I can't trust her with food.

Now please excuse me but I must cry.

Handmade Alpaca Shawl for FPWR

My dear US readers please do check out the handmade alapaca shawl being sold on eBay. Charlene, the seller, is a PWS mom who will be donating the proceeds from this sale to FPWR. If you don't need one you can get is a a gift or at least show the link to your friends. Give to charity and get something unique and beautiful in return! Just two day and a few hours left to bid....

Hate is Such A Strong Word...

..but we use it everyday. It's convenient.

I just wanted to start this blog with something not "meme-ish". Lots of people HATE being tagged but I don't know if I'm weird or people are just cranky. I actually love being tagged. So anyway, Andrea tagged me a few weeks back and I only got around to writing this post today. Here goes.

1. Food you hate - Durian. I can't take the smell! I used to hate dinuguan (blood stew..tama ba?), siopao (sabi nila made from cats), and maling (sabi din nila may fetus daw!!! waah!) but I eat them now though they still don't count as favorites.

2. Fruits you hate - Durian pa rin! I don't like lychee either.

3. Veggies that you hate - I love veggies but even I can't take "ligaw na ampalaya". I love eating the normal variety of ampalaya but the ones my mom like to pick off from weeds are just too bitter.

4. Celebrities or people that you hate - Angelina Jolie...but only when I'm feeling jealous. I actually like her and respect her...except when I see Mark's face getting REALLY happy. Insecure!!! :p It is a rare thing for me to thoroughly dislike actual people I meet, but when I do Mark starts trying to convince me to "stop the hate". I get a bit too passionate about it...

5. Event/Incident/Situation that you hate - PWS and going to hospitals. Dealing with health insurance people and some doctors (actually just one) who makes me feel like sh*t for not being able to afford all the therapies, medications, and vaccines my son needs. It makes me burning mad, guilty, weak, and hopeless all at the same time. They have absolutely no idea what it's like! Burn them in, well not hell because that would be too much, maybe in boiling oil for even just a few seconds? Agh! I HATE remembering that!

6. TV shows or movies that you hate - Jackass (I won't link to it). I know I'm corny but I don't like stuff like that. It's plain stupid. Stupid isn't always funny for me. I do see the appeal at times though I try to stay clear of them before I start acquiring a taste for it.

7. Type of music that you hate - I just know when I don't like something but I can't really hate a certain "type" of music since once in a while a real good song comes out and it surprises me that it's from a genre I don't really listen to.

8. Household chore that you hate - Washing dishes. Isn't that the universal disliked chore?

9. Things you hate about the world - Sickness, Intolerance, Apathy. I still believe (sometimes...hehe) that if we all cared for each other (even if just in general terms) then the problems will be solved...except maybe for diseases, which need research. Sigh.

10. Things you hate about yourself - Pride, laziness and being too reactive. I want to be more proactive and not get bogged down too easily.

Winnie the Pooh and PWS

I enjoy looking at the search strings that bring people to this blog. Mostly though I find that people who land here do so due to the word "bimbo". For the first time someone landed on BookishBimbo while trying to figure out something about Prader Willi Syndrome. I guess it was a kid though because he/she entered the cutest search string of all time...

DOES WINNIE THE POOH HAVE PRADER WILLI SYNROME?

I have never thought about it before but here is my answer. I do hope whoever is looking for the answer visits again so he/she will know my thoughts on this one.

Let's see. Here is picture of Pooh.

Here are some of the common things people with PWS have.

1. Hyperphagia - doesn't get full
2. Slow metabolism
3. Low energy levels
4. Short stature
5. Stubby hands and feet
6. Tendency to get obese

Comparing the two I would definitely say that Pooh DOES have Prader Willi Syndrome. After all look at Pooh eating that honey in the picture above. Look at him laze around.

He is kind of short (though Piglet is much smaller) and would benefit from growth hormone shots except that I'm not sure if there's any Bear Growth Hormone available in the market. Look at his cute little stub called feet and hands. Pooh isn't obese but they might be managing his weight gain pretty well though he can use some slimming down. And last but not the least Pooh is extremely lovable just like kids with PWS are. Look at him with his friends.

Hmmm. Maybe Pooh should be invited to PWS fundraisers! Now, I'm pretty sure I'll love Pooh even more because of this.

Just for Laughs: Romancing Policeman

I wonder how Mark would have reacted if it was me.... ROFL. I would love to work for this TV show!!!

One Small Step to Help Kids with PWS

In support of FPWR I have decided to blog about all the upcoming fund raising events held by members. Though no events are scheduled for this month there'll be three events this August. Venues will be in Seattle, Pennsylvania, and Ontario. So if you know someone who lives there or nearby encourage them to go even if it's just to educate themselves about PWS.

August FPWR Fundraisers:

Second Annual Seattle Walkathon (August 4)
Venue:
The Landing at Bothell Park
9919 NE 180th St
Bothell, WA, 98011-1925
United States
Activities:
walk, water balloon toss, bubble machine, face and hair painting, feeding the ducks, music, games, healthy snacks, bouncy house

Philadelphia Golf Tourney (August 17)
Venue:
Juniata Golf Club
1391 E. Cayuga Street
Philadelphia, PA, 19124
United States
Activities:
Golf tournament, food, drinks, reception, skill contests, awarding of prizes

"One Small Step" Walk-a-thon (August 19)
(check out their website it's really nice)
Venue:
Centennial Park
256 Centennial Park Rd
Toronto, ON, M9C 5N3
Canada
Activities/Entertainment:

• Surprise Guest appearances including Elmo, Carlton the Bear (Toronto Maple Leafs Mascot) and friends.
• Soccer exhibition and tricks by Willy G. the Soccer Freestyler ( www.madskillsinc. com)
• Live music provided by Lost Americas Band
• Music by RPM DJ Crew
• Free airbrush tattoos
• Kid's Area including jumping castle, face painting, and children's games

No that isn't my Sam but these are kids like him that are battling with PWS.

Root Canal?

My tooth hurts. I can't think too well and research much. Still waiting for mark to come home and bring me pain killers. I am allergic to Ibuprofen and Mefenamic Acid so I can't take those. The paracetamol isn't working too well. Just had this tooth temporarily filled to see if we can save it. Hopefully the pain subsides in a couple of days. It not this means that I will either need to have it pulled or ask the dentist to do a root canal.

Root canal image source is this link.

Jam you had the procedure before right? Did it hurt too much and how much did it cost? I don't want to have my tooth pulled but I might have to if it exceeds our reimbursable dental budget too much.

BTW the dentist was really nice. In fact he was so nice that I decided that we could trust Sam with him. He had his baby girl in the clinic so I know he can handle a child. Will bring Sam over on Thursday for his first dental check up (which he badly needs). The dentist said he'll just check Sam's teeth first and allow Sam to know him and see the tools before going back to have his teeth cleaned. He says it's important for Sam to get familiarized so he won't get scared of dentists. Even if we move to another insurance I think I'll keep this dentist for Sam. He also doesn't know about PWS but he told me he'd do research first to make sure he gives Sam the best care. Now that kind of attitude is something that puts me at ease.

Cyber Romance

This is a good day. Opened my inbox and found a link to this.

Made me remember when I got mad at Mark when we were still in college. He sent me on a mini-treasure hunt when I arrived at school. Our Apphy classmates (I remember Alvin Tapia in particular) excitedly "helping me" find the clue and decode it by hand since I didn't get the fact that I was just supposed to click on the butterfly in the powerpoint presentation to be able to decode it. In the end the treasure hunt lead to this webpage (am so happy it still exists) and to dinner that night with Joe Cool (the McDonalds Happy Meal toy that I really liked).

I love it when my husband's geekiness is used for corny romantic stuff. It makes me fall in love again. Hihi. ^_^