Wednesday, January 24, 2018

Today, it's 200 Filipino NF Friends!

I’m not sure if it’s okay to be happy about this, but I AM SO GLAD!

Ever since I met my first, NF Friend (Ate Cel), I’ve started listing down the names of my NF Friends. Wala lang. Gusto ko lang.

I started writing it on Notepad (the app).

And then the names on the list reached 15++, so I transferred it to MS Excel while we were hoping that we’ll be plenty enough to be able to form a support group.

And then NFF Support Group was born!

I keep revising and editing the list as our members grew in number. When it reached 50, I wished that if only I can group the members according to theeir location so that they’ll know who lives near who. But I think it won’t be fair for some if nobody else is located near them. 

Fast forward to today, we already have: 65 NF Friends from Metro Manila, 12 NF Friends in Rizal, 14 NF friend in Laguna, 13 NF Friends in Cavite, 8 NF Friends in Bulacan, 10 NF Friends in Southern Luzon, 23 NF Friends in Northern Luzon, 27 NF Friends in Visayas, 17 NF Friends in Mindanao, and 10 Filipinos with NF from outside the country.

Once again, I have mixed feelings about this. Happy that we already have a lot of members and it’s now a 3-digit number. Sad that there are a lot of us who have NF. And then VERY HAPPY that we found each other! We are really not alone.
The other night, while I was arranging & organizing the list, I suddenly felt so amazed, happy, & grateful all at the same time and so I posted this:

It goes something like this:

When there are members who were able to find NFF (support group) because a random person approached them and asked: “Do you have NF?” and then told them about NEUROFIBROMATOSIS FRIENDS (Philippines).

When there a students who send messages to the NFF page because of their case study, thesis or assignment that is about NF.

NF may still be not that known and a lot of people are still not aware about it but *tears of joy because even if it’s something small and only a few people knows about it, still there is something.

It’s just like the saying, “every cent counts.”

Big things are made of small things, right?

Friday, January 19, 2018

I bought Ardeur De France Perfumes from Betsy

So one of our NF Friends is selling Ardeur De France Perfumes.

While I was talking with her and getting to know each other, I decided to buy the products she’s selling. No, she didn’t talk me out of it. No sales talk or something. I just suddenly said, “I will order perfumes.”

Why? Because it made me happy.

It’s always glad to know that a family or friend sells something to earn an extra income, no matter how small it is. As you know, I’m really a big fan of the words “every cent counts” and “I CAN.”

So I bought Ardeur De France Perfumes from Betsy.

Now I know why Betsy is one of their best sellers.


Interested? Get in touch with Betsy Victor at 09278548657

You can check out  Betsy's Facebook .

Friday, December 1, 2017

I was sad today. Past tense.

I suddenly felt sad. So sad.

I remembered my dream last night / this morning. There will be a gift-giving event like MAY Birthday Project that’s going to happen on January and I was very happy and so excited. No, I wasn’t the one who organized it but I was really really excited to join. And then I woke up.

While I was taking a shower a while ago, I suddenly thought of that dream and then I felt really really sad. I was crying without tears but it’s a bit dramatic coz the water from the shower was pouring (Now I am laughing when I think about it. Haha.)

Why am (was) I sad?

Because ever since MAY Birthday Project (MBP) ended 2 years ago, I don’t hear (not literally) or read much about gift-giving events like that anymore (except for The Gift of Hearing of Ma’am Iche, Mommy G’s advocacy projects & Ate Cres’ upcoming event for PWD kids).

When there was MBP for 9 years, It seems like there were lots of gift-giving events like that here and there, and then WALA NA. I’m not talking about those that were organized by a certain group, organizations or companies, but ordinary citizens like you and me.

“In those 9 years, I have proven that we don’t have to be a celebrity, politician or someone who’s rich and has a lot of money in order to do something like that. From something that was so small, together with my close friends & family, I was able to start it. I did it, I continue doing it and surprisingly, it became bigger and better year after year, from 2007 to 2015.”

We really had to to end it after the 9th MBP and I seems to me that the joy of caring & sharing that MBP also ended with it and I am very disappointed.

I know it’s not my fault for ending it but I can’t help but feel so bad.

Para kasing ako lang ang natuwa sa tuwa ng mga nabigyan namin kahit alam ko na hindi naman ganon. Ganyan lang talaga ako mag-drama. :P

It’s just so sad and I comforted myself with 9 years worth of happy faces from all the MBP and prevent myself from crying & hyperventilating.

I don’t really know why I’ve suddenly thought about this. Maybe because it’s the December 1 today.

And BTW, I’m not so sad anymore.
  Advance Merry Christmas, everyone!  

Monday, November 27, 2017

It's a WONDERful life!

When I read Ate Pam Roman’s post about the WONDER movie block screening of PSOD, I was so ecstatic!

A post shared by Kcat Yarza (@kcatyarza) on

“When given the choice between being right or kind, choose kind.”

Juan “Dickoy” Magdaraog organized this event in celebration of his 40th birthday.

When he was diagnosed with Pompe Disease, a rare neuromuscular disorder, they we’re told that he won’t be able to reach past 30, and he will be turning 40 tomorrow. A wonderful milestone for him and to commemorate this, Dickoy wanted to do something meaningful.

It’s not just meaningful, IT’S WONDERFUL!

“Greatness is not being strong but using strength to carry the most hearts.”

Last November 25, Dickoy held a movie block screening of Wonder for the benefit of the Philippine Society for Orphan Disorders (PSOD) – a non-profit organization that advocates and cares for people, especially children with rare diseases and 100% of the ticket sales went to PSOD. Wonderful!

“I've been given the chance to live longer than what I thought possible. It will be awesome to help others live longer than they thought possible too,” said Dickoy.

“Be kind for everyone is fighting a hard battle. Be kind.”

When I learned about Dickoy’s story years back, it really amazed me. I was inspired. It instantly became one of my motivations to keep doing what I’ve been doing and that I can do more because PWDs are Persons With Determination!

with Juan "Dickoy" Magdaraog

Finally! I was able to meet Ate Pam and Julia the pretty and cheerful “silent angel” who is battling with Rett syndrome – a rare, severe neurological disorder that affects mostly girls.

with Ate Pam & Julia

"We all deserve a standing ovation at least once in our lives."

I love the book! I love the movie! And you should see it too when it comes out to PH theaters in 2 days.

Wednesday, November 1, 2017

My Powerlifter #BestBrother

October 29, 2017 – We went to Great Eastern Hotel in Quezon City for the 2017 Luzon Open and National Interschool Raw Powerlifting Championships that was hosted by the Powerlifting Association of the Philippines

My brother, Maro, and his FlexHub (fitness gym) team joined the competition.

The event was so long, but very much worth it and I actually had a great time watching the completion.

I’m not really a sport fanatic but I enjoyed watching sports competitions especially when someone I know or my friends know is / are participating in it, who doesn’t anyway?

The weight of the “weights” they were lifting — whatever you call that, is just so WOW!

It’s equivalent to:
• Kcat on a wheelchair.
• Kcat times two.
• Kcat Yarza times three.
• Kcat Yarza times four.

Kcat's weight is about 50 kg, so figure it out.

I had fun watching the yellow & red lights too that signals if the powerlifter did good (yellow light) or not (red light).

It was really fun, good thing I brought  with me the baby rattle that my niece left behind at our house. I used the rattle in lieu of clapping my hands. Haha.




And so Maro won a gold medal!

He got the highest score in the men’s high school division.

Let me share with you the conversation of my mom & my brother after the competition:

Mami: “Anak, what did u learn from your competition experience?”

Maro: “Wala nman akong expectations. Wala akong paki.”

Mami: “But see, mabait ka kasi and God-fearing. Whatever your prayers nung anticipated mass (the day before the event)...... GOD gave you more than what you asked for!”

Maro: “l love God.”

Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! hank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you!

Tuesday, October 17, 2017

So my tumor shrunk

"How did your tumor shrink? What did you do?"

I’ve been getting those questions lately and here is my answer:

What did I do to make it shrink? NOTHING.

Maybe it’s because I’m drinking Reliv Now with LunaRich.

Maybe because of the the turmeric and black pepper capsule that I’m taking.

I don’t know. I really don’t. It really just happened. Last September 11, it was still big and painful and then TAAA-DAAA and then 6 days after, TAAA-DAAA again!!

But this I’m very very very sure of:
GOD made this happen!

No, I'm not irritated because people keep answering these questions. Actually, I'm really so amazed and I want to share it to everyone that's why I am posting it.

Or maybe, it’s because I am exercising my legs and the tumor lose its weight. Haha. Just kiddin

Sunday, October 15, 2017

13 years of winning versus NF

I was having double vision. Went to neurologist and neuro-ophthalmologist. EMG (electromyogram) test said something is wrong with my nerves. What is it? Undefined. Then MRI (magnetic resonance imaging) of the brain it is! There were 3 big white spots on my MRI plates. Brain tumors. I have brain tumors. I didn’t feel sad, or maybe a bit sad at first; though I really can’t remember feeling sad that time. In fact, when I got home, I was running around our compound raising and telling everyone that I have brain tumors like I was on a show and tell. I was definitely happy about it, buy why should I feel sad when I don’t feel sad. In fact, I was amazed because not everyone has brain tumors. Maybe I’m really weird. Haha. And now I know the answer: FAITH. I from from the start that everything has a reason, I didn’t know what that reason is, I have no idea what is it, but I know that there is.¬

After 2 or 3 visits to the neurosurgeon’s clinic, I was diagnosed with NEUROFIBROMATOSIS TYPE 2 (NF2) on October 15, 2004.

All along, I thought it was August 2004 but then again I saw that my first MRI was done was on September 29, 2004 (link the fb album) and I was able to figure it out, thanks to my blog, an online journal & my memory.

I was diagnosed a day before our simple DBS Batch 2000 get-together at Dencio’s Grill in Megamall. I can recall telling them that I have neuro something something – a long & tongue twisting word “basta may brain tumors ako” – I can recall cheerfully saying those words. Haha.

That was also the day (err, night) that we (Lea, Pau & I) became friends with Madie again. That was one of my significant “everything has a reason” in life.

Madie organized and gathered some of our batch mates and found a way to raised funds for me at Don Bosco Technical College Alumni Homecoming & Jig concert in 2005 in Jig 2006 as well and so on.

Later on, we found out that I have the type 1 (NF1) as well and all my diagnosis (or misdiagnosis) in the past were ann symptoms of NF1.

“You don’t look sick.”
“Maybe you are sad about it and you are just hiding it.”
“You must be in a lot of pain.”
“Are you really alright?”
“Are you sure you are not scared?”

My family & friends keep telling me those words especially whenever I say: “I AM OK”

I keep telling them that I am fine, being sick and having brain tumors really doesn’t make me feel sad, I am not scared (not a bit), etc.

No, I don’t really find it irritating because I understand the reason they are saying those words. Those are their TLC (tender loving care).

I wrote this on October 17, 2004:
“She (Tita Angie) asked me what I really feel daw. I told her, "tanggap ko" (“I accept it”). I’m not trying to hide my feelings. Whatever I'm showing, ‘yun na ‘yon (that’s it). Why should I cry? Why should I get lonely? Ano magagawa non dba?! (What can it do, right?!) I shouldn't stop living life the way i want it to be just because I’m sick. Lalo lang ako magkakasakit (The more will I get sick) like depression or something.
There’s a reason behind all these. I know there is. O diba?! (Right?!) Is this really me?! I'm not just showing you that I'm a strong person even though I’m really scared. I need to be strong, but I’m not really that scared. Ganito lang talaga ako. (This is really how I am) Even in the hardest situations, I still try to look on the positive side of things. Even if it's isn't visible, I will really find it. 
Hindi ako nagpapaka-manhid (I’m not being numb). This is how I am. This is how I take it. Smile nalang (just smile). I don't really want people's pity, though I’m really touched whenever someone comforts me or lets me feel their concern. As in! Promise. But you don't really have to think about it a lot of times and be bothered by it. Sige na nga, alam ko na hindi niyo naman mapipigilan mag-worry kaya (Okay, I know that you can’t really stop being worried, so) THANK YOU.”
 And then on November 19, 2004
“My mom and I went to PGH this morning to meet with the chairman of neurosciences, Dr. Willy Lopez, for a second opinion. Well, I really need to undergo surgery. Maybe in 2 weeks.. 3 weeks.. I’m not sure but I think it's gonna be within this year which is in less than 2 months.. Hay-ay-ay! Hehe!”
At one look on my MRI plates (When we barged his office. Haha.), he knew that it was NF2 at once.

We visited Dr. Lopez’ clinic the following week and then he became my doctor and took care of me since then.

Ever since then, a lot of thing had happened. Good things. Bad thing. Problems. Pain. Struggles. Triumphs. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc. Etc.

Like you and most people, I also felt like I was pushed flat on the ground, everything's seems wrong and I can't do anything about it, but I chose to stand up and move, Little by little, with all of my might, no matter how little it is. I’ve fought, I’m still fighting and I’ll always be fighting through life.

While tapping my head, my mom said, “You are so blessed!”

And because I keep moving and fighting, the blessings that I’ve been receiving are my reward. So, the bigger the battle that we’ll conquer, the bigger the reward.

And I am very grateful because God put me in this kind of battle; a battle that HE is a part of.

Cheers to 13 years of living an AWESOME LIFE despite of battling with NF!

Those are tumors. Blue and green are the colors of NF. 13 years. And 13 is also my favorite number.

Friday, October 13, 2017

Suddenly, the tumor on my left leg became smaller & smaller

Wednesday night, when I was exercising with Michelle, I told her that I’m puzzled and a bit confused because the tumor on my left leg seems like it got smaller again but I’m really not sure.

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