PWD Chronicles: Watch and Learn

Answering the question: "HOW ARE YOU?" can really be so exhausting at times so more often than not I find myself saying: "I'm fine!" and my insides just scream the painful hell out of me saying: AMALAYER... hehe...

I don't look sick...
but you don't look stupid...
looks can be deceiving... http://www.butyoudontlooksick.com/

I hope those who truly care for me may take time to watch this video to further explain what: "I'M FINE" really means to me... Apart from having Epilepsy, Muscular Myotonic Dystrophy, Degenerative Disc Disease, GERD and a fatty liver, I also happen to suffer this Chronic Fatigue Syndrome... I am not posting all these for pity... I don't need it... I need your prayers... nothing more, nothing less... I don't need judgement, I am bound to face the final one (we all are, anyway)... just please allow me to enjoy life while it lasts...

 

I DIDN'T GET THIS BECAUSE I LACK SLEEP... IT IS THE OTHER WAY AROUND... I LACK SLEEP BECAUSE I HAVE THIS... FOR CRYING OUT LOUD... IT'S NOT THAT I DON'T HAVE BETTER THINGS TO DO RATHER THAN SPENDING TIME SURFING THE NET... IT IS THE LEAST PAINFUL/DANGEROUS THING TO DO WHEN YOU ARE HANDICAPPED, WELL THAT'S WAY BETTER THAN CRYING & CURSING THE DAY I WAS BORN, MIND YOU...

 

Despite all these, I am grateful for my life... 

my pain and/or the people who want to put me don't can't make me feel otherwise...

God is good!

He makes all things beautiful...

In HIS time...

PWD Chronicles: Fly me to the moon...

Ever since I was a child, I have always wanted to explore the world... I wanted to be a flight attendant so I can earn while I'm living my dream...

I've always wanted to travel...  to see new places... to meet new faces...

but God has other plans...

After a college degree, a marriage degree and a kid, I still tried my luck...
degree = check... 
height = check...
face = DOUBLE check (just kidding)...
vital stats = TRIPLE check (pagbigyan nyo na)
skills = ?HALA!?!??!?! "swimming skill" is a must for a flight attendant...
dun pa lang BOKYA na... I never learned how to swim (because even as a child, I already had this muscle sprain -pulikat- my reflexes were very slow to respond given that I was hyper active pa at that time... back then, I thought it was just an embarrassing thing... now, science has got a name for it "MUSCULAR MYOTONIC DYSTROPHY"-soshal na pulikat/pamimitig ng laman-laman... Now, that explains why I was never successful with girly Chinese garter tricks without getting wounded because I would usually trip & fall face first on the ground as I hopped... hmmm... kaya siguro ako na-'pango'... sabi ko na eh, I have this feeling that I was born with a perfectly-pointed nose but those frequent accidents might've caused my misfortune hahaha...

Growing up, I was able to go places... my parents were self-financed missionaries who spread the word of God to the poorest of the poor---... so I got to travel... but not really the kind that I have dreamt of... it's fulfilling though... I just wished I was able to document those mission works... we went places, gathered experiences, name it... (I'll try to get some photos-if there are still anything left of it)... so I told myself, "this is living my dream the noble way"... hmmm... di ko naman kasi na-mention kay Lord na gusto ko pleasure travel sabi ko lang gusto ko magtravel... that mission work didn't last long coz my father passed away even before he landed to his dream mission trip... THE HOLY LAND... he got financed by a philanthropist who sends preachers like him as tourist guides to the HOLY LAND but before he was able to fly, he was diagnosed with Liver Cirrhosis (which is now very clear to me - having the same symptoms due to excessive meds my fatty liver is also acting up- Tatay got his cirrhosis from the chronic liver problems brought about by eating whatever was served during his mission works then... my Nanay would usually scold him for that but she wasn't able to stop him from showing the people in the mountains/depressed areas that he was one of them... his immersion tactics led him to heaven's gate if I may say so... My Nanay would rather have us and herself starved to death than eat food that she didn't prepare-kaya siguro buhay pa kami)... so in short, my travel dreams died with my father...

Being married to a homebody made my dream to travel a luxurious FANTASY that could only happen when I am asleep and since I'm an insomniac, ALAM NA... impossible na talaga... during our first few years as a couple, he would rather buy food, sit back and relax at home than go to the mall to see the movies... given that he is a movie buff, he would patiently wait for his movies to be shown on TV rather than making short trips to the movie house... mind you, we didn't have cable pa then so waiting was like forever... gladly, we both landed a job in the film-making industry, so we got to have free movie passes from time to time... PAMBIHIRA NAMAN KUNG DI PA KAMI MAGMALL diba... I never got tired of praying to God, asking Him to give me the chance to see other places apart from the usual workplace, our home and the places in between... hahaha... True enough that when you pray with the purest intent, He will grant your wish... I was able to go places... thank You, Lord! pero may mali na naman sa prayers ko... sabi ko kasi "LORD, SANA KAHIT MINSAN LANG PALABASIN NYO AKO NG PILIPINAS"... so minsan nga lang... hehe...

Given all the answered prayer, multiple entry visas, the 'moohlas' to travel... I am here... UNFIT to travel... immobile... (thank God, my upper extremities are still cooperating though-oops, wag nating batiin baka maki-join sa pagha-hibernate ng legs ko)...

Can you just imagine how someone who loves to travel, someone whose only dream is to explore the world she lives in feels like when she cannot move her legs given her strong will and unkaboggable youth... it is beyond words... it is insanely absurd... ironically frustrating... but life has to go on... taking those small steps at a time is always better than lying on the bed... getting somewhere is already an answered prayer... short distance walks without pain really make me smile... long distance road trips make my heart shout for joy... and having those moments with my boys captured in photos makes me sing praises... having friends and family who understand what I am going through and reading/hearing/seeing those affirmative gestures of hope that I will be better again already make me feel heaven down here on earth...

I am forever grateful...
I am very much alive...
still breathing...
and hoping for a clearance to travel by plane (aba at talagang umaasa pa ah... OH YES, hope is the air that I breathe...)
And yes, those supermarket trips I usually do alone whenever I feel like it has become an addition to our family bonding activities... I can now have my husband join me inside the fitting room every time I go shopping for clothes... you see the perks of being God's favorite child/PWD-Persons With Divine love... He has got His reason, I am enjoying each season... to date, it is the season of love and unity... because I am never alone... I got nurses - one in SKYPE (virtual Nurse Jill), one on the phone (phone-a-nurse-Eva) and a doctor in the house (Dr. House aka Mr. Big)...

now, my hands are kinda asking me to rest... til my next kwento...

PWD Chronicles: Seizures (I'm sick, no doubt)... cease yours (coz those doubts you can live without)...

At 33, I have witnessed two of my batch-mates die of serious illnesses, one with a brain tumor and the other with cancer... they were both fighters, but they succumbed to their illnesses in such a short span of time... When a "once young" fella (like seventy-ish...++) die of such conditions we would usually hear people at the wake say: "He/she lived a full life... he/she had served his/her purpose... he/she accomplished his/her mission"... but when someone 30ish die, it is just shocking... Unfortunate... sad, sad story... Why? are short-lived lives unaccomplished?! but what if they have lived it to the fullest?! who knows? Apart from being sad about their passing, I became wary coz I have not been health-conscious for a long time... what if something happens to me? how will my boys carry on without me? I was anxious that I wanted to start the year right...

January of this year, my husband and I started with a cardio-something program at the gym...
Towards the end of my first session, I felt some kind of numbness-turned-tiredness-turned-painful cramps all over my body... I ignored it thinking it might just be a natural physical reaction cause I was "exercise-less" for a long time... I opted to ignore the pain as it worsened hoping it would go away as soon as my body gets accustomed to the exercise pattern... but after two weeks, I had a partial UNMOVABLE - UNCONTROLLABLE body (it was a battle between feeling nothing-as in numb- and feeling excruciating pain). I had it checked at a nearby mall-clinic (as I have this "hospital"-phobia)... they gave me several lab tests (blood stuff-xray-physical, etc)... then the Doctor prescribed painkillers but to no avail...  prescribed stronger painkillers... again to no avail... those pills even gave me more pain and allergies... for the 'nth' follow-up check up, my doctor gave me steroids for pain so I can sleep at night... steroids kinda cheated the pain coz it made me focus on my blisters, swollen gums, bloated face etc... in short, my condition got worse... I thought I can live with the pain and somehow get used to it... but I thought wrong... two consecutive seizures got me so scared that I found myself seeking for a second, hmm... actually, 3rd? opinion... I was referred to a Internal Med - Cardiologist at the best hospital in our country... so back to square one... blood test, Holter-monitoring twas a cool stuff, etc blah blah... all the lab results were clean and I am as healthy as a horse... PRAISE THE LORD!!! Ok... that being my state of mind, I started ignoring the pain and lived the way I used to... mind you, with the excruciating pain getting worse, I almost wished to join  my Tatay as he rests in peace... day by day, I was becoming emotionally weak as my body got weaker and weaker at that time... My soul was willing but my flesh was so weak... it was frustrating because my beloved husband's birthday was fast approaching and much as I wanted to go to the mall to get him something, I was too weak to care... thank goodness we're living in this electronic age... 212121 just gets everything done in a jiffy... who says an immobile like me couldn't make a big surprise?! hehe... no matter how strong my faith was, my body says otherwise... my husband could no longer bear watching me like that so he researched and found doctors who would best figure out what causes my symptoms... 

A set of Neurologists - Neurosurgeons... An Ortho... And a Psychiatrist (just kidding)... after running some serious tests like Cranial, cervical, spinal MRIs ; EEG, EMG, EMG-NCV; etc etc they found out that I had a post encephalitis-something (get ready to drown with medical terms here hahaha)...
Let's cut it short, so to date:  I have an Epilepsy (EPI-caused by a tiny brain tumor -> causing the seizures), I also happen to have a Muscular Myotonic Dystrophy (MMD- congenital- but late onset) and the one causing the pain - I am suffering from a Degenerative Disc Disease- Spondylosis -Cervical Spinal Stenosis (DDD- is a natural condition if I am 60-ish but since I am 30-ish it is an abnormality)... Given all these, when people ask me how I am or why have I been checking in-&-out of the hospital lately, I instantly get tired just by thinking of how to explain my condition... so I'd often answer like this :"ETO... wish ko lang FLU sakit ko, madaling gamutin, madaling i-explain at lalung lalo na madaling i-spell haha---lahat ng sakit ko madali sanang gamutin kung hindi sila nagsabay-sabay kasi yung solusyon sa isa-ikamamatay nung isa-pagmay ginamot kahit alin sa kanila lalala yung iba...waaaaaaaahhhhh!!!"... it's not a sarcasm... I wish there's a term or more like, words that would not sound alarming but could explain my condition well... after months and months of suffering from these conditions, I still can't find a better way to tell my story...  I'll try to find time to explain each of my condition in layman's term in my upcoming blog posts... Just an update: my fatty liver is advancing its way to create a scene as the lead role but my GERD/Heartburn is making sure it still holds the title being the most sensitive case of all times...

To this day, I am still in denial about the severity of my condition... I am keeping the faith, faking the pain, playing hide and seek with hope... I am in the process of making the most of what is left for me (how ever long or short that may be)... Living life one day at a time is in itself rewarding because when you know that you may be gone anytime, you will have no room for the unnecessary-YOU WILL DO NOTHING BUT GOOD DEEDS... I am coping with all the emotional stress that came along with this challenge... My boys are trying to make this fight as fun as ever... my family, friends---those who have personal knowledge of my condition are worried sick as hell but they are keeping my spirit high... Living with physical pain is already sickening, being "literally" sick is far much worse but having people wanting to see you bounce back to your old healthy "YOU" makes each day bearable... thank you guys!

I can't blame those who couldn't believe that I am terminally ill... coz I myself DON'T hehehe... I can go on and on with stories about how uplifting and/or depressing those disbelief had made me feel for the past months... (again, I'd also reserve that for my upcoming posts)... Mind you, being sick and choosing to stay on the bed can be literally FATAL... so sharing the itsy bitsy stuff about it may be helpful or may be harmful as I have to go through the details again... but then again, what is there to lose anyway... I'd write, shop, talk, dance, sing, cook, glide and most of all, TRAVEL while I still can... for what it's worth, this is the time when I have to go beyond the limits of medicine... when the doctors tell you that you have incurable diseases, you can either die of sadness-self-pity-sorrow or you can happily live life to the fullest... I chose the latter... 

I'm not giving up without a fight... I am struggling with fate along with my faith for my boys because each day I only get to choose between less painful and painfully-numbing-pain... so on my less painful days, I join my friends who never get tired of dragging me out of bed, bringing me to places, throwing instant parties in my honor haha... it is beyond words when people make you feel very important especially when you have nothing to offer to them except a little "thanks" with a matching smile... my goodness, this has been quite a battle... I don't have an idea where and how this is gonna end but allow me to share my journey with you... It is not morbid to plan about that special day when all these would come to its final rest... It is scary, it is sad, it is uncomfortable but hello, I'm still alive... and kicking... allow me to fight with passion and fashion... I will discover myself more and more until my last breath and I will do it with style... with a smile... and a grateful heart...