Monday, April 23, 2018

You are PWD unfriendly, Fisher Mall!

I decided not to make my unlove letter to Fisher Mall because  DON'T LIKE HATE and I choose ACTION instead.

My mom tried filing a complaint to Fisher Mall management the next day. To no avail...WALA!
Sunday we went back to Fisher Mall for the second day event.My mom went to the ladies’ CR to look for the janitress who helped us and sign as witness to the photos we took inside the cubicle. But she referred my mom to a person from an admin office representative.
According to Ms. Jendrean Lo, a Tenant Relations Officer, that wide door cubicle is intended for PWD, but my mom reitererated, how can you say it's for PWD? Not a single railing inside? Then Ms. Lo said "Mam sa ibang floors po may pwd CR"
All floors must have PWD CR, and to think that 4th floor is where their events hall are. 
So we filed a complaint directly to National Council on Disability Affairs (NCDA) and here's the draft of my letter.

Dear NCDA,


Last April 21, 2018, I have learned that Fisher Mall in Quezon City is PWD unfriendly because it hurt my feelings and hurt my mom’s lower back / spine. I am a PWD, my mom is a PWD – both of us have orthopedic disability.

We went to Fisher Mall to watch the National Open & Age Group Raw Powerlifting completion that was held on the event hall on the mall’s 4th floor. While watching the event, I told my mom that I need to pee and asked her to bring me to the toilet. Luckily, my dad was there to push my wheelchair because the toilet is a bit far from the event hall and since my mom uses a cane to walk, it’ll be hard for her to push my wheelchair alone. So we reached the toilet area. There is no PWD toilet. Good thing there’s a designated cubicle for PWD. Good thing? Or so I thought.

Since it is a women’s toilet, my dad can’t go inside so it was only me and my mom and that’s alright because she’s been assisting me in a PWD toilet for years and it’s not that hard since there are bars that we can hold on to that helps us in keeping our balance. 

With a flat wall and nothing to hold on to except my frail mother. We were looking around and tried to figure out how I can transfer from the wheelchair to the toilet bowl. We really can’t think of any easy way, we still can’t figure it out and I want to pee already. Bahala na! 

While I was transferring to the toilet bowl, the lower part of my left leg kind of hit my wheelchair. I have a big tumor inside it and although it doesn’t really hurt, that legs reacts and jerks every time that happens. It happened and fortunately it happened when I was about to sit on the bowl.

And so I have to transfer from the toilet bowl to the wheelchair. My mom lifted me up again. My left leg felt so weak and I can feel my mom’s brittle bones and I was afraid to hold on to tighten my hold on her brittle bone. I tried holding on to the flat wall but it just slipped. We were about to fall and then my mom pushed me on the wheelchair so that I won’t land on the floor. I was slouched on the wheelchair, my butt on the air, only my hips up to my back were touching the wheelchair, I haven’t wore my underwear and shorts yet and the worst part is, my mother’s hips, back and spine were aching. Thankfully, the janitress was on standby outside the cubicle’s door when my mom opened it to ask for help because I was still slouched and hanging on the wheelchair without underwear and shorts.

Because of their lack of sensitivity and concern for the PWDs, my mom’s weak bones that are often in pain became weaker and she need to undergo rehabilitation therapy.

Also, the so-called PWD cubicle is not big enough. The wheelchair can’t navigate properly.

***pwd door***

If this happened to us, how about the other PWDs who will be using that so-called PWD toilet cubicle? The management kept saying that there are the PWD toilets on the other floor levels? And why not on the 4th floor then? I don’t think it’s not that hard to attach bars on the toilet wall that the PWDs can hold on to.

I am really looking forward for you to take action and investigate on this. It’s not only for my sake or my mom but for the PWDs who will also use that toilet in the future.

Maria Kathrina Lopez Yarza

We are also filing a complaint against the Fisher Mall Management for my Mom's injury.
I depend a lot on her since I am partially paralyzed, totally deaf and half blind.  And her mobility after that incident is quite restricted now. What if I fell from my wheelchair during that incident?

Monday, April 09, 2018

Today was my most awaited night

Like always, Michelle & Kathreen had a joint birthday celebration and sponsored our KAINAN SA LABAS NG BAHAY dinner. It’s something we really enjoyed doing since we we’re kids. Our first salu-salo dinner sa labas ng bahay was tuyo. 

Going back, so we had dinner a few hours ago and I was really amazed with what I saw. Yes SAW! I saw the food and things on the table. I saw the utensils. I saw their faces. I saw their gestures. I saw their moving lips. I saw the foods on my plate. I saw this. I saw that. My vision is still kinda blurry but I SAW.

Since last year, whenever we would eat outside the house with friends and/or family, I would always complain that it’s too dark and I can’t recognize the people & the food especially the food on my plate so after eating, as I say, I’ll just “eat and run” and go inside the house once I would finished eating and there were times that I chose not to come outside and have then bring the plate with food to me. It’s really annoying so instead of staying annoyed, I choose ti come where the bright light is.

“Wala naman akong masyadong nakikita kaya papasok nalang ako sa bahay.” 
“Papasok na ko kasi magku-kwento pa ko sa blog.”

Teacher Michelle's creamy carbonara na masarap

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, December 01, 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 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 01, 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.

The next day, I remembered about it while I was organizing my files and I saw the video taken last October 6 about the shrinking of the tumor so I compared it and I WAS SO AMAZED ONCE AGAIN!!!

A week ago, I wondered: Why does my left leg still keeps on jerking even though there’s not pain anymore.

And now I think I got it… NANINIBAGO & NAGBABAGO PA, maybe?

Miracle? YES!!! I believe it & I can feel it!

Friday, October 06, 2017

GOD surprised me today!

A very very very AMAZING thing happened tonight!!!!!!

After my kicking exercise, instead of putting down my left leg, I placed my left foot above my right knee; dume-kwatro & when I touched the lower part of my left leg, I WAS SO SURPRISED! I kept saying: “Parang lumiit?!” I was talking about the tumor. It became smaller! It’s still there, but smaller. The best part is, it doesn’t hurt anymore.


And I know and I’m sure that this is all God’s doing.


During my checkup last May or June (I’m too lazy to check), I told Dr. Lopez about the tumor on my leg that’s getting bigger & painful. He touched it & it was a bit painful and said that it’ll that it’ll be hard to remove it.

A certain brain tumor become aggressive it’ll make my left leg weaker and I was kinda worried that this leg tumor might become bigger and much painful. I was so worried about it but I didn’t tell anyone but God. I didn’t really prayed and asked Him to remove it, make it calmer or make it smaller. I just told Him about it just like how I usually have a conversation with my friends; that’s how I really talk with Him ever since whenever.

I didn’t pray for it but HE GAVE IT TO ME!

Like always, therefore I conclude:

Related Posts Plugin for WordPress, Blogger...