Random Thoughts #1

a2289375280_10I have been a hemiplegic for four years and four months already, yes that long. But even with that, I don’t expect people to understand what happened to me, but if they ask or are curious, I would be willing to share my story, di naman ako madamot. I don’t expect people to know what happened to me, friends or relatives even if I’m the most active person in Facebook, because I know that they have their own lives to mind. Case in point, two weeks ago, some relatives visited our house, I was sitting in the garage, some people say that when I don’t stand up to walk, they wouldn’t suspect that I am a disable, parts of my face might show it, yes my face is still a bit distorted, or twitched, but it’s not very obvious. Well, I didn’t stand up to welcome them, I stay seated but eventually they went in , while they were in the living room I had to go to the bathroom and as I entered the living room limping they were surprised and even asked “ o anong nangyari dito?”. Like I said, I don’t mind if they didn’t know, I didn’t take offense specially when one of them apologized and told me, “ay sorry, hindi namin alam”. They probably were expecting earlier that I should have stood up and opened the gate for them.  Tatay explained to them and told my story. Again, I will repeat, I don’t expect people to understand or even know. But of course for people who do know my story and knew what happened to me, I would be the one to have expectations. It’s not easy for me to walk in unfamiliar surroundings, I don’t like to go to places that have not been inspected prior, ayoko ng nangangapa, I want to know if there are ramps, stairs or distant parking spaces, or if there’s even a parking for that matter.  It’s not easy to walk in even surfaces, much so in sloping floors. Nanay would always tell me to go to church and hear mass but I explained to her that with all the slopes in the church it’s a herculean task for me, actually I could try if I want to but what I fear the most is twisting my ankle, I’m already disabled, magiging double disabled pa?

I have so many fears. Being in my body, have I told you it’s difficult? To reach for something on the floor is very difficult but I can do it, I have the will, I have the power, if I set my mind to do something I will do it, hindi ako pabebe. 3 years ago I thought it would be impossible to get rid of my nurse but I have been bothered by the bills we have to pay, so to get rid of the nurse, I have to be able to do things on my own I need to be able to give myself a proper bath, I need to be able to feed myself, yes, like going to the kitchen getting my mug and prepare coffee, getting a plate, heat my bread and eat on my own. Taking a bath is not so difficult but getting dressed is. I had to watch you tube videos on how to wear brassiere with one working arm, happily I can report that yes, I can do it already. Of course you already know that I can cook and bake, but mind you, it’s with an assistant, and without her, sorry to say I can’t and wouldn’t be able to do it, that’s why I’m super grateful for the presence of Del, our house help. I can also clean our house on my own when Del isn’t around, I can sweep the floor and mop afterwards. Ohh how liberating it is to talk about the things that one can do. I don’t want to think about the things I cannot do. I will just focus on those that I can. But people drag you down sometimes. I have said that I don’t expect people to know and understand what happened to me, I mentioned it probably ten times already. But I also said that for those people who do know, I expect more, that’s why it hurts to know that some people perceive me as a snob just because I don’t approach them to have conversations, did I mention it’s not easy to walk? Do I need to be the one to go to you and kiss your ass? Mygahd. I hate drags. When I was living normally, I mean, back in the day when I was still normal, I am the most misunderstood person. I don’t blame people to think that way, because being me is truly polarizing. I cannot say that I have changed positively, but I am constantly trying. I try to compensate for those things that I cannot do. Say, I cannot go to you to mingle or build, or rebuild relationship or friendship, I will find a way to do so. Something that I’m probably good at.so don’t you even say that I’m not trying because you know that I do try, and sometimes, I try so hard, bordering on OA. Honestly, there are times when I don’t even want to try anymore. When that time comes, I hope to God, you remember.


A Time Bomb in my Head

Yes it happened to me. It took me weeks before I was finally able to convince m self that yes it really did happen, and yes I cannot walk anymore.
Exactly 15 days after my 34th birthday I suffered from a massive stroke which left the half part of my body, my left side close to paralyzed, though my neuro surgeon said it’s not paralyzed because it has reflexes.
It was the morning of October 22, an ordinary working day for me but before going to work since I still have ample time I drove my daughter to school and got back home to play with my little boy before I took my bath. I remember sitting on the corner of my daughter’s bed faced the mirror and started putting on makeup. Then all of a sudden I felt a blinding, searing pain on the right side of my head behind my eye .it was so excruciatingly painful that I almost dropped to the floor. I looked at my own image in the mirror and saw drool on the corner of my mouth which made me panicked. Actually what I felt that time was fear. I was so afraid. I stood up from the bed and transferred to my own room not knowing that this will be the last time I would be able to walk normally. I lay down on the bed and screamed for my mother’s name.. My uncle Robert who lives next door rushed to my side. Knelt down beside the bed and tried to calm me. I told him my head is aching so badly while crying loudly and I asked to be brought to the hospital. I then decided to call my husband on my cell, he was actually at work. When he answered the phone I started talking but I was actually blabbering. My speech was so incoherent and he cannot understand a thing I was saying. I can perfectly think of what to say but words do not form in my mouth. It was jumbled and slurred. I was actually trying to tell him my head seems to want to explode and we will go to the hospital. But nothing of that sort came out. They said I passed out after that. My father arrived from campaign and when he saw me unconscious he immediately hoisted me on his shoulder, all 5 foot 9 inches of me and carried me to the car and rushed me to the nearest hospital. They then informed my sisters of what had happened. My youngest sister Mel who was then 5 months pregnant arrived in the hospital to check on me. She then informed my ate Dessa who lives in the UK of what happened.
My road to acceptance was a difficult one. I experienced the stages of grieving as if somebody died. I later on realized was grieving for the loss of the life I have yet to live. I am only 34, I am still so young. I have two young kids to care for. I have so many dreams for myself and for them. I want to travel the world. I have a career. I am a manager of a popular coffee chain for close to 10 years. i. I cannot believe I had a stroke. Stroke only happens to old people. to a distant relative, to the uncle of a co-worker, but not to someone close to you and definitely not to yourself.. Although I don’t live a perfectly healthy and balanced life, I know that I did not neglect my body, my life. I don’t have vices, I don’t smoke and I don’t drink so why me?
Apparently I have an avm in the brain, or what they call arteriovenuous malformation. I first heard the disease avm when I asked what happened to me.it it is a congenital disorder which shows abnormal connection of arteries and veins in the brain. It’s like a tangle of veins. It occurs to about 1%of the population – it is considered as a rare disease.
When I arrived in the hospital I was already comatose. The clot was seen in the CT scan it is located on the right front temporal lobes measuring at least3.6×5.2x6cmclose to the edge or in the basal ganglia. They need to make a decision to operate on me now otherwise I could die. . When my family told the surgeon that they would push through with the craniotomy the hospital lobby began to be filled with friends, co-partners and a few relatives who started praying. I was wheeled in the OR at 3pm and transferred to the ICU at 7pm. . My neuro surgeon Dr.Carlo Barredo used titanium clips to stop 3 arteries from profusely bleeding. They were able to drain about 58ml of blood from my brain.
I awoke 10 days later without a single recollection of what had happened.. I was in denial the longest time. I was hallucinating most days. I was discharged November 10. When we got home my uncle Doy, my mother’s brother, my husband and a nurse took care of me. I was in denial that I would pretend to them and to myself that I’m not sick. I would deliberately stand up from the bed and naturally since my left side is weak I would fall. This happened several times that I had to be checked for fracture on the shoulder blades. I kept on telling them that I am only dreaming and that all of them are part of my dream. .i has so many hallucinations. But the memorable ones were my constant rambling that I won 200 million in the lottery, that I bought antizombie vaccines. I was not sleeping and eating so naturally I lost a lot of weight- about 15 lbs. looked like a zombie with my eyes so dark and the flesh on my cheeks disappeared… my mind is filled with thoughts of despair and hopelessness. I didn’t want to accept any visitors as I don’t want them to see me in this condition. I would often just stare blankly on the wall and ponder why this happened. I would feel so sorry for myself and for my family. Who will take care of my children? What about their education? Technically I have a job but not earning anything. I was thinking of our daily expenses. My husband would often tell me not to worry about it and that he has everything under control. He would urge me to just focus on my recovery. He would persuade me to watch movies but I would tell them that I cannot understand the movie. And I would just turn it off. Approaching the latter part of November I started attending physical therapy rehab sessions which greatly improved my confidence since I can now already walk with the aid of a cane. Rehab also improved my endurance. I can now go to the dining room to eat and to the bathroom to take a bath .a lot of times I would ask my sister Mel and my nanay to sit beside me and narrate everything that had happened. They would patiently tell me the story over and over again and answered all of my questions however silly it may seem. This constant story telling sessions helped a lot as it slowly pushed the idea in my head that something like this really happened to me..Often times we would laugh at the absurdity of my hallucinations. Since I cannot physically go to church I just wake up very early on Sundays and watch the Healing Eucharist on TV. This helped greatly even though I would often find myself crying the entire mass. I realized that this is the only time I really get to listen and absorb the readings and the homily.. I prayed more often and have very long conversations with God daily. One thing I’m proud of myself is that I never blamed God. I have accepted my fate although reluctantly but I was never angry with Him. There were just instances I would desperately plead for Him to make me well and bargain with Him that I would do anything, everything if I would get well. I would serve Him again just like I used to since I used to sing in the choir.. Every night I would plead to God to heal me and make me whole again.. There were days I would be so depressed I would cry nonstop. I would call for my tatay and would cry on his shoulders, something I have never done in my life. I would cling to him like a child and he would embrace me, stroke my back and reassure me that everything will be alright and that they would never abandon me. Because that time that was my fear. I fear that people would get tired waiting for the day that I would be back on my feet specially Lay my husband but I later on realized I was so selfish for even thinking that. My husband is my hero. His strength is admirable. He never buckled under all the stress. He remained to be strong for me and for our children. He never left my side in the hospital and would just go home to take a nap and have a little quality time with our children and attend my daughter’s school activities.at home he continued to care for me, giving me baths, ensuring I’m eating properly patiently pushing food in my spoon since I cannot hold a fork, and doing my daily stretches necessary to prevent muscle spasticity. He lacked sleep and lost weight too. Suddenly no one is taking care of him any more.one time I asked him what is the single most difficult part of this entire ordeal. And he told me it was the time I was in denial when I asked why. He just said it pains him to see me that way and that the longer I am in denial the longer it will take for me to accept what had happened. His love is so immense and not once he made me feel unimportant. With the calendar slowly inching to Christmas I began to feel a little helpless. Christmas is a big event and this is the time of the year I’m usually very busy baking cookies and cheesecakes to sell to friends and co-workers. This i also the time I go out to shop for gifts for my family and friends and god children. I started to miss working and I again worried if I would still have a job to go back to.. Despite the daily struggle. I managed to keep a positive spirit because I cannot be defeated by this illness. People around me believed so much on my capability and fighting spirit so why doubt myself?. I shouldn’t be grieving in the first place. We only grieve for some thing or someone we have lost. But I haven’t lost anything. There is still so much hope which was the message of Christmas. When super typhoon Haiyan/ Yolanda struck our country I was in the recovery room of the hospital. The devastation of the typhoon was in the news for days and weeks. When I begin to feel hopeless. My husband would tell me and remind me that we are lucky to be alive. While those in Tacloban just woke up with their entire family dead. He would also often remind me that my illness has cure not like cancer if only I would just focus and be strong especially for the kids. When I had the stroke I almost died but God has a different plan. He wanted me to continue on with my life. He wanted me to have more laughter filled road trips with my family. I know God wanted me to see my children grow up to be successful adults.. God wanted me to have more celebrations of anniversaries and birthdays with my husband.
I was so lucky. I have a time bomb waiting to explode in my head but it went off at just the right time. I am very lucky to have a supportive family. I am very lucky to have friends who prayed and showed support for me. Friends I haven’t seen in years but took time to visit me Friends from faraway places visiting the country because of the holidays. Pia who came from Hawaii spent a few hours with me which I will never forget. Leah who arrived from Perth, Australia visited me with her children in tow and I delighted in our kwentuhan. I have felt their love these genuine friends who despite time and distance showed that they will remain to be friends, in rough waters, and stormy seas and not just during fair weather. And Fiona, my high school best friend too who sent me messages of encouragement and financially helped me too.im very lucky because only the left side of my body is affected and I can still function with my right, and I thank God I’m right-handed. I’m lucky because my speech, memory and coordination are not affected. I am very lucky because I had the bleed I think in just the right age. It will bleed for sure but it happened last year. God gave me the chance to become a mother first God gave me the once in a lifetime chance of meeting my soul mate. I am lucky when I had the stroke I was at home and was not driving or was not in some remote place. I was lucky to have an excellent surgeon
I just think of my experience as an eye opener. This wouldn’t have happened had I stopped for a moment to appreciate the good life God had given me. A life which can be taken away just as easily from me. I have learned so many things. I have learned to value family.it was now easy to tell my parents and my sisters I love them something I haven’t done prior to the bleed. I have learned to value friendship. I have learned to value the small thingslike smiling at people you meet when you go out, people you don’t really know – complete strangers. I have learned to be thankful. I take time now to hug and say a word of thanks to people who have helped us in this ordeal. my nurses when I see them in the hospital.my therapists, our house helps, my kids yaya
I had my cerebral angiogram done last February to check for left over clot if there’s any and to check the status of the avm. Unfortunately the angiogram showed that another avm formed on the same area. My neuro suspect it could possibly be brought about by the clipping of the first avm, the anatomy of the avm could have altered the affected area thus giving birth to another one, though this one is really small. Even though small it still has the potential to bleed but it could also disappear on its own which is something we really hope for since we don’t have the finances for stereotactic radio surgery. Right now I leave everything to the Lord. I asked Him to take control of my life. There’s nothing much I can do now but improve my physical condition for the sake of my family. I leave everything up to God and I know he will never abandon me. I know God loves me and I’m holding on to His promise dearly.

Im a Grenade

I woke up very early last February3 to a rumbly tummy but remembered that I cannot eat not even take a sip of water since I need to fast for my scheduled cerebral angiogram at 6:00 am. It was only 4am and I’m still sleepy but I need to begin my day now. And if I don’t move fast enough we will be late. My angiogram is to be done in Medical City Ortigas by Dr.Peter Rivera. It was a Monday so naturally it’s going to be one hell of traffic wherever you go. So we left before 5am and took the C5 route, we got there with plenty of time to spare and it was still dark. I was wheeled into the radiology department by Lay and we were met by a pleasant nurse who got a wee bit surprised since it is really early. Guess she wasn’t informed that there’s a procedure to be done that early in the day. She made us fill out something and contacted my neurologist. When she got the approval she got my vital signs and led us to the waiting area. It was a small room with a bed a lazy boy and a television set. After waiting awhile she introduced me to several male nurses, or probably interns and they transferred me to another bed and took me to the laboratory. The lab was state of the art. There were computer monitors hanging from the ceiling and really bright lights and it was cold. I was just in a hospital gown and I was shivering. My doctor arrived and they started to prepare.my doctor explained what’s going to happen and what I needed to do. He said they are going to pass a tiny catheter through my right groin and that will course through my vein up to the brain and it will inject a dye and he will then take pictures of my brain and that it is important that I do not move, not even flinch. I can’t even breathe so I need told my breath for about 5 seconds. And only when he give the signal that I can breathe that’s the only time that I can. He said that he’s going to put anaesthesia on my groin so the pain would be more bearable. . I would also be given IV. Since my affected side was left the IV was placed on my right. Normally the IV is passed through the hand right? But the intern can’t seem to find a vein and after 2 tries (ouch) he gave up and told my doctor about his situation. Even my doctor can’t seem to find a vein so he said they will just put the IV on my arm.it was uncomfortable so they placed a splint on my elbow so I wouldn’t be able to fold it. After the procedure I need to lie down for four hours in the waiting room with both my legs propped up on pillows and without a pillow on my head. I was also advised not to move too much. And then they started. My doctor asked me if I was okay. I said yes but I am a bit cold and then they turned on a blower positioned on the foot of my bed and it blew warm air and it felt so damn good. It made me feel a little better and less nervous. They also attached a devise on my leg to monitor my blood pressure. The actual insertion of the catheter was not painful at all. I guess my tolerance for pain after 3 surgeries and a hundred or so needlepointed to my skin in the past made me immune a bit to the physical pain.

brainWhen the doctor started to inject the dye I felt it pass through my neck like a warm trickle. There was a big screen on my left and I tried to move just my eye to check it and I can see the dye travelling through the veins slowly. I held my breath like instructed. Well, it wasn’t that hard. There were 8 more pictures to take and I was praying to God to please make everything okay. Then it was done. They placed a hard ball-like thing on my groin and pressed it hard and held it there for 10 minutes. My back was aching badly and I wanted to stand up but I remembered I can’t. I also wanted to pee. They transferred me to another bed and brought me back to the waiting area where Lay was waiting. My hunger then became a monster but I have never wanted something so badly in my life back then but to drink water. So lay gave me water which I drank through a straw. I watched something on TV but can’t remember exactly what was it. Lay slept on the lazy boy and after a while went to fix the papers. Around 1pm Dr.Rivera arrived to deliver the bad news. He said that there is still another avm seen on the angiogram but this one is tiny and fills very slowly. Upon hearing that I felt like the whole world crashed on me. I was so hopeful. I was praying all the time how could this happen? Isn’t my situation at the moment enough? Do I need to really suffer more? When I heard that I kept a straight face like it didn’t bothered me at all. He said we need to see him in his clinic at the medical arts building after we got discharged in the lab. To explain further. So finally around 3pm we went to his clinic and he explained that what he saw in the angiogram could be an avm which formed after surgery. This was the same explanation given by my neuro surgeon. Because I wondered – how can an avm form in my brain now? When it’s supposed to be congenital or inborn? Arent avms formed during the growth of the embryo in the mother’s womb? Then he explained that since he clipped 3 arteries in my brain with titanium clips of course there wouldn’t be a passage for the blood to pass through so in that case the blood probably took on another route thus the birth of my”new” avm. But wait, there’s good news! Really doc?? The veins fills very slow so the probability that it will burst is lower than my first avm. I just need to be very careful in monitoring my blood pressure. Meaning I can’t get too agitated, need to watch what I eat, etc etc. etc. So I’m a grenade. I can explode any time. Lately I was thinking. Would everything turn out to be futile? Meaning- I’ve been working my ass up in rehab and for what? I’ve been willing myself to get better each day when there is another time bomb ticking somewhere in my temporal lobe. Life is not fair. So if you think you have a difficult life, think again

a sort of lifeline

a sort of lifeline

having a rare disease can be very depressing but its really good to know that you are not alone with your battles. there will be people who would be more than willing to help you out. people who suffered the same fate and can definitely understand you and would know the right things to say to soothe you or just be a friend.. I actually did not stumble upon this site mindlessly. my eldest sister sort of pushed me to sign up. she’s on the other side of the world by the way, so the pushing was done verbally in facetime. and I would like to thank her forinsisting on this because this is one of the best things that has happened in a long while.initially I was skeptical because the first time I opened the site alli have read are seizures occurring after the operation and I became afraid. now iam active in posting discussions and sharing my experiences with my fellow survivors. that’s it for now. I will try to update you with my ctivities as I have planned a lot.



As explained by the American Stroke Association

What is a brain AVM?
Normally, arteries carry blood containing oxygen from the heart to the brain, and veins carry blood with less oxygen away from the brain and back to the heart. When an arteriovenous malformation (AVM) occurs, a tangle of blood vessels in the brain or on its surface bypassesnormal brain tissue and directly diverts blood from the arteries to the veins. Brain AVMs are usually congenital, meaning someone is born with one. But they’re usually not hereditary. People probably don’t inherit an AVM from their parents, and they probably won’t pass one on to their children.This occurs to about 1%of the population or about 1 in 500 people. I know right? and that 1 happened to be me. That is the reason why I got all the time to waste now writingthis blog. don’t get me wrong, im way past the angry stage or the denial stage. I have already come to accept my situation and is now trying my hardest to cope and improve my situation. I have attached a picture of me post craniotomy while I was in the ICU so you could picture how bad it was. I hope you are not eating lest your appetite be ruined..

my AVM according to my neuro surgeon is located on the right frontotemporal lobesmeasuring at least3.6×5.2x6cmclose to the edgeor in the basal ganglia if I remember it right. the hemorrhage was so massive and they were able to drain about 58ml of blood.


why am I starting a blog? well, plainly because Igot nothing else to do. im done bawling and ranting and I think its time to move on and move forward. its been almost 5 months anyway. eversince that unfateful day in October I haven’t regained my old self. and what would I write about? oh well I don’t know, I would write what I want this is my blog anyway. I could write anything I want. and I don’t care if you like it or not. there is nothing I care about any more nowadays. except for my family and my spiritual;ity.. i would like to share to you my story in bits and pieces the way i know how to tell it. so bear with me.

my story is no fairy tale but of course i still want a happy ending the a happy ever after kind. im a long way from there that’s why im taking baby steps. thus my tag line.