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?

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.

MAY IS NEUROFIBROMATOSIS (NF) AWARENESS MONTH

When we are aware about something, we start caring about that something and because of caring, great things can happen; small and big things.

I made an NF AWARENESS Twibbon that can be used by anyone and everyone – with and without NF. Use this and show your support. It may be a simple and trivial thing to do but this little thing ban bring us closer to greater things.

https://twibbon.com/Support/nf-awareness-month-2

Know all about NF and share the information to at least one person. In this way, we can make NF known and increase the possibility of finding a cure for it.

Be aware about NF and show everyone that you care.

Please visit our page:
NEUROFIBROMATOSIS FRIENDS (Philippines)

NF Amici (NF Friends)

Sunday is family day & I spent the 1st Sunday of August with some of my NFF family.

I’ve been meaning to invite these friends for a meal and thank God, I was able to make it happen. I often chat and talk with them; some I even talk to almost 24/7. They even accompany me and won’t leave me behind online whenever I’m all by myself at home (binabantayan daw ako) and I’m super touched. While they would often tell me me how I’ve helped and inspired them, they helped and inspire me as well. They often make me smile and laugh too.

Last Sunday I met up with my NF friends for a pizza & pasta lunch date at Amici in Megamall. Good food + Great Friends = Awesome!

  

   

 

After showing off my head (sira ulo hahaha) and how my left fingers and my left foot moves, I discovered a new improvement with my left foot. Those improvements may only seem trivial, but it really means a lot. Showing-off my the “my tricks” is my way of telling people that I really can’t but I CAN, so whatever you are going through, never give up. As long as you try, YOU CAN do it too. I’ll make a separate post about this…soon.

Amici means friends in Italian. We are NF Amici!

KCAT CAN: The sincerity of children

The sincerity of children

Look at children. Of course, they may quarrel, but they do not harbor ill feelings as much or as long as adults do. Most adults have the advantage of education over children, but what is the use of an education if they show a big smile while hiding negative feelings deep inside? Children don’t usually act in such a manner. If they feel angry with someone, they express it, and then it is finished. — Dalai Lama XIV

One day, my friends wondered. “How does one feel when one is doing something just for the sake of getting the job done, to gain praises or popularity, without a bit of sincerity?”

Kinda headache...GONE

I had a weird dream. It was raining non-stop and it's becoming stronger and stronger until there was an explosive sound. I closed my eyes and DECIDED to wake up upon opening my eyes. Yes, decided talaga. I often do it whenever I my dream gets irritating. Seryoso. Anyway, it was only 6:30 (or 6:40) AM and I'm still sleepy so I closed my eyes again, placed the tape back and went back to sleep. Tss. To be continued ang dream. It's still the non-stop rain outside our home. the sound of the raindrops is deafening as it gets stronger and stronger. The only thing I can hear is that irritating raindrops. Nakakabingi! Nakakairita! Eh di I woke up again. 9AM (or was that 8:30?) My head feels so heavy naman. Ang bigat bigat. Tulog nalang uli. Non-stop rain AGAIN!!!! And the whole house is moisting up this time.. Ayoko na nga! I finally woke up for real at 10AM with a heavy head and KINDA HEADACHE.

Heavy head w/c I call "kinda headache" often happens to me. Sanay na ko coz it disappears din naman after sometime.

But it's already gone a few minutes after I applied this (AS IN!):

Zenutrients Massage Oil

Meet-up with my NF Friends

Last August 2, my NFFs had a not-so-planned meet-up at Megamall. Syempre late ako!!!

Photo from Nilo

Thanks for the Bubble Tea & Chewy Junior treats Kuya Land!

Next meeting/topic: Christmas Party!

KCAT CAN: Addressing a global issue

Addressing a global issue
By Maria Kathrina Lopez Yarza
Published: May 13, 2013

It’S my birthday today! The month of May has always been special to me not only because this is my birth month, but because of a couple of other reasons that calls for a celebration. Most of my family members were born this month – my uncle on the 6th, my dad on the 10th, my cousin on the 16th, my brother on the 17th, my grandmother on the 20thh and my mother on the 27th.

This May 18 will be our 7th annual gift-giving at the Philippine General Hospital and I’m certain that it will be as successful as the previous years. More importantly, it’s also Neurofibromatosis (NF) Awareness Month, and I’ll get to celebrate it with my NF friends who’ll be joining me in my upcoming birthday project to spread NF awareness on May 18. Someday, I wish that we’ll have our own NF event in the country.