Canopy Walk, Then Attacked by a Rhino Beetle

    The year 2011 began, I was ambitious as ever.  Mom's friend who went to Poring weeks before said I would never be able to climb all the way to the top where the canopy walk was.  Yeah, you can say I'm as stubborn as a mule but the more people say I can't make it, the more I wana try.

    It is 835 meters up from the first step up the path.  Doesn't include the walk from the parking lot.  Thst mskes it more than 1670 meters including the 4 canopy bridges we had to pass.  But heck, i made it!!!  Difficult as it is for an MS patient, I trained prior to the trip.  Cycled, walked on a treadmill, I did my share of personal training to ensure that I can make it to the top. And so I did!

    It was only on the way back, after lunch that I was attacked by that giant beetle.  I've always suffered from severe pins and needles so I thought the prickling was normal.  That was until the sucker sank all its claws in my right leg and I looked down to my horror.  It was gigantic, the size of my palm!  I freaked!  No one dared to get the beetle off me looking at the size of it. In the end mom kicked it off.  I asked if the beetle had poison, whether I can die.  A lady said they should be harmless.  My guide said if harmless then why is her leg bleeding.  I had 8 holes on my leg bleeding!  I found out later on that it was more than 8 holes in my leg.  It left holes whereever it moved on me.  I saw this beetle at a bug exhibition later but it was so peuny compared with the one that attacked me.

    The next day I vomitted in a tribemen's home, twice!  I was feeling sick since the day before but thought the psin would all just go away.  I was wrong.  So i was sick till I came back.  Miserable experience...and the hotel I stayed in was far from everywhere except banks and a police station.  If it wasn't because I was sick, any woman would have enjoyed going shopping.     

2011

    It's a new year...lots of fireworks, damn changes in the country leaving me with another difficult year ahead.  Yipee!  I can't thank our government for making their citizens, let alone the disabled like myself, to go through the joy of having to remember their plastic bags everytime they need to buy something.  Poor producers of plastic bags.  The trees dont benefit from less usage of ot.  The environment would benefit even more if cigarettes, car sales is limited to a certain number per family even plain littering is banned.  If you really want to recycle, then do it wisely.  Prohibitting the use of plastic bags and having the stupid supermarkets charge innocent customers for it saves their money but not ours!  Bravo for another genious idea that inevitably leads to more distruction....

New Look

    I've been searching for things to give me thrill in life after getting sick.  I regret not enjoying when I ws perfectly normal and kept delaying things thill it isnt aas convenient for me to do a lot of things now.  I know I'm not so into extreme events in the past but I now seek adrenline rush to mask the boredome in my life these days.
    I was insane enough to have my hair permed yesterday.  I have never had my hair done in the 27 years of my life, not even for special events ike my graduation.  The hair styliist even asked after the whole 3 hour long procedure was done if I was preparing for a dinner or something and I replied 'it's for the heck of it'.  I've never experience having my hair washed so many times before-once after every procedure. There was even a point I felt my brain was being friend in the machine! Now I feel I look like Medusa!  I honestly don't know how to manage my hair! 
    So what's next to try in life?  I guess time will tell.
   

Disappointed

Sometimes you just don't know what has happened...people simply change and you don't even know why.  The person you treated as a true friend seems to have preferred listening to whatever crap other people have been saying.  The fact that no attempt was made to even made to discuss matters together seems to show how much the person cherishes the friendship. 

In conclusion....

Finally, I can proudly say the doctor at 104 are wrong...all the suffering they have put me through arguing that I have this and not that and blah, blah, blah have all been wrong!  My results are back.  It has ruled out numerous leukodystrophies.  Therefore, it can be concluded that I have Multitple Sclerosis!!!!

Realization

    There was a period last week that left me extremely discouraged and grumpy.  I felt the people I trusted, whom I was willing to help, betrayed me.  I tried to control my temper but snapped when a contractor was trying to take advantage of me.  I screwed him!  My life would be at stake of the fusebox malfunctioned because I paid for a good brand but a cheap, lousy type was installed in my home.  I threatened the man that if I were to burn to death or be electrocuted, I would return as a lost soul to take him with me!  That was the pent up anger in my heart that I had for the people in my damn country, the damn country where I suffered. 
    In my life, i have been considerate enough to think of other people before doing anything but have realized there are actually people out there who may have lost their brain or heart along the way.  Out of sheer desperation and because I was questioned as to whether my Professor Dr would ask me to carry out the medical procedure, I emailed the Professor to share my predicament.  He was more than willing to refer me.  This touched my heart.  When i received the letter today, I wanted to cry.  I had even told him to state that I requested to see the other dr myself so he would be at no liability whatsoever for referring me.  To my surprise, he didnt write anything like that.  I was referred as his patient as there were doubts on my diagnosis. 
    I wish there were compassionate drs in my state.  Our world is so complex that it consists of so many types of people and problems.  Like in terms of friends, there are those who stab you in the back and leave you to bleed and those who walk with you till the very end.  Each step of the way, I am learning.  Perhaps its with all this that i am able to grow stronger in life and realize how to overcome each problem. 
   

Life Sucks But It Goes On

    I was diagnosed 16 June with mild glaucoma.  I cant help but think of all those times I went to see other opthalmologist in the past and its only now that I'm being diagnosed with it.  Yes I wanted to cry.  I mean, I am now already in a difficult period of my life and I do not need other issues to worry about. 
   I blame the bitch doctor for giving me all this grief.  If it's not because of her, I may not have had so many relapses, I wouldn't be sent to the opthalmologist to be checked for optic neuritis to end up with glaucoma instead. 
    I have yet to do many things in life and therefore I can't and won't give up!  I will fight until the very end.  I know my doctor in Butterworth is trying her best to be there for me.  I really appreciate it.  I feel it's people like her that's God-sent.  As for those who have betrayed me, they will get their return someday.  And so life just goes on... 

I can't help but laugh like I'm insane

    After months of waiting, my biomarker results are out!!!  And it's negative!!!!  I know the damn doctors from PGH are gonna say negative doesn't always mean negative but heck it's 70% that I do not have NMO!  That's a high chance, don't you think??  And if results mean nothing, then why were they so eager to find out in the 1st place?     I'm not trying to be arrogant to say I told you so but I feel that bitch doctor has gone overboard in causing me so much grief!  It's time for her to bang her head against the wall, get down on her knees and pray that God will open the eyes of her heart!!

If Only Life Was Like a Fairy Tale

    Perhaps I've read too much while I was a kid but I've always wished life was different.  I've always hoped for a price to take me out of this God forsaking land, that I can do the things I've always yearned to do in life, that i would be able to achieve all I've ever dreamed of. 
    I guess I've been too ambitious.  I've built things up to lose everything again.  Strove my ass off to end up suffering when dreams are shattered once again.  I've been getting tangible stuff that many people would say is an act of insanity or plain wastage but these are the only things that I can hold on to and own. 
    I want but I'm a top scorer in Economics so I fully understand the theory of opportunity cost due to the limited $$$ that I hold.  Wish I could win the lottery so I don't have to stay here, in this damn hell that I'm in now?  I'm just tired of having parents who seem to enjoy ruining my life because they enjoy giving me extra burdens to worry about.  When people tell me famiily is the best, I will laugh because i feel family are the ones who can kill you and get away with it.

My Supply

    Received news on Thursday that my supply of interferon has been renewed.  I now have to wait for the drug company to send the supply over to the pharmacy.  So far its coming to 8 months since my last relapse and well I'm happy!  Based on prior history, I've been having relapses every 3-4 month when I'm not on the drug.  If you ask me, this fact already proves that the drug has helped in controlling whatever disease I am having now.  Results for the NMO IgG have yet to be released yet so I'm still waiting.  Whether my results are positive or negative, I'm hoping to prove my point.  The medical field is not meant to be so rigid.  They say NMO can only be treated with immunosuppressants.  So even if my results come out positive, the fact that interferon has worked in curbing the progression of the disease will prove my point.  If it comes out negative then it's I TOLD YOU SO!  So many doctors have been saying I have MS but there are still those who are arguing that I dont have that.  Only time will tell....

Ignorant people!!

    I feel highly irritated.  No it's not due to PMS!  More of due to the ignorant nature of people in life.  I didn't have to be brought up to understand and think about other people's feelings.  It's an innate ability of mine to think before i speak.  However there are just people who are just so inconsiderate that I can't help but wonder if their skull is empty.  Or perhaps i should make them feel how they make people feel.  But then again, i don't want to be like them.  Life sucks!  

Good Ol' Friends

    The fact that I am able to get in touch with people I've never spoken to in 15 years is really a blessing.  They were classmates from elementary.  Though we have'nt spoken for so long, its amazing the things we can chat about.  I wouls love to find more classmates but there are certain people whose last names I cant seem to recall.   But hey able to clean the cobwebs of many people's memories!  I do hope to be able to get in contact with more people and visit them one day.  It would be a heck of a reunion!

If I Had A Million Bucks

    Let's just face it, if I had the money, i would buy a plane ticket and leave this damn country for good!  I'm highly irritated with everything that's been going on lately.
    The standard of health care in the country already needs improving and yet we have ministers reducing the period required for housemanship.  I guess they wouldn't care losing a few innocent patients due to the 'negligence' of their staff since theres always 'backdoors' and 'rugs' to sweep things under.
    Based on personal experience, there are housemen (note it's plural) who don't even know how to insert an IV head into a vein.  Some even behave like kids in school, beating other colleagues with their stetoscope. 
    And my conclusion is, Malaysia Bolehkah?  I'm still waiting for them to prove my point wrong!

Things don't look good...

    Grandma fell at nite 3 weeks ago and had a minor stroke.  Other than bruises, she was still able to eat and talk though the stories she told were ridiculous.  Said there were to Indian having sex at a room 'back there' and my dad had to chase them out!  When I asked my dad about this, he got shocked and laughed.  So that's how we knew granny's brain signals got haywired somewhere. 
    It's almost a month since she was admitted and thanks to the 'professional ' care of the drs, she's now in a death bed.  She lost so much weight, I feel she's thinner than me.  She no longer knows how to even suck a straw and can't swallow a spoon of milk without choking.  There's been slight improvement these few days as they force-feed her using a tube now.
    My 'hell' begins this coming Saturday, 17th because a bitch cousin is coming back to supposedly see grandma.  She can't even pay for her own passport or plane ticket.  Another cousin arranged everything for her because he's scared grandma can die at any moment.  I'm praying somehow, someway she doesn't get out of the plane as shes a useless bum who just knows how to butt in people's business and ruin a person's peace.  She expects everyone to feed her and her whole family while she enjoys life without working.
    I've a baseball bat ready to wack her if she gets on my nerves, a rubberband gun used to shoot lizards which I will not hesitate to use against this giant 'lizard', a basketbchopall which I can use to test my aiming and knives in  the kitchen to chop her into pieces if she drives me insane!  That's is how much I hate her! 
    3 damn weeks of having a pesticide in the house....I wanted to arrange a trip for myself so I don't have to be around but mom says 'what if grandma dies while I'm not around?'.  She's also afraid I may get injurewd again.  Life just sucks.  I just fell last Friday and have a giant, swollen bruise on my left leg. 
   5 more days of peace and counting....

Singapore appointment

Was in Singapore beginning of this month for the long awaited appointment with the neurologist there to have the special test done.  What are my comments regarding the appointment?  M doctor looks young!  No white hair!  I'm hoping the people who reads this doesn't know him...

He needs 3 more  patient's blood to be sent over to Japan for testing.  I wanted to book a flight in July or August but my mom was making noise saying results won't be ready yet but I found out today that results should be ready by May.  Too late cos i already paid for my flight tickets.  Next trip to Singapore is September.

He feels my case looks more like NMO than MS...same basis as to why I was arguing with the drs in Penang GH that what I had in 1999 is ADEM and not MS.  He's aware im on interferon now and until results prove otherwise, I can continue on that.  He also doesn't feel it can be Krabbe!

Thanksgiving!

    I miss celebrating Thanksgiving!  We used to have the turkey and pumpkin pie and all.  We carved pumpkin into faces and really had fun. 
    Malaysia doesn't do all this.  This is the difference between the country I grew up in and the damn place I'm stuck in now.  I find the country is in a mess now.  It's suppose to be democratic but if the heads don't listen to the citizens, what kind of democracy is this?
    We are encouraged to promote our country to our friends overseas but how can I when this is the country that i'm suffering in now.  I'm a victim of a controversy of opinions.  Until now, I have no final diagnosis.  I've arranged to see a dr in Singapore 1 March 2010 to have a diagnostic test done to either confirm or rule out a possible diagnosis.  Yes it's expensive going all the way there just to see a dr.  His consultation fee alone is like over RM300 but i don't have much of a choice.  I'm fighting with Great Eastern for my TPD claim.  If they pay me then i won't be so financially burdened with all these medical costs. 
    I have been in so much pain for so long i  don't even remember what being pain-free is like.  I don't have any fond memories of or in this country.  I've even wondered if I was a baby mix up since my hair is a different colour from everyone else in my family and no one else has this demyelinating condition!  It's only ME!

Color Deficiency??

    After being referred to the Opthalmology department for additional tests-the drs in the neurology departmentfeel there has to be something physically wrong with my eyes, I was put through numerous tests, one mainly for color blindness. I know I can't be color blind as, well let's just face it, my world has been full of color for 26 years except for the short period when I had a flare-up of ADEM when all I saw were shadows.  But that only lasted a number of days! 

    When the optometrists opened their book to ask me to take the Ishihara test, I shook my head.  That was the same type of test I had to take fpr my driving license and though I passed last time, I had difficulty telling the examiners years ago what # was the page.  To me, when people ask me what I see, I tell them lots of spots with colors on it.  A rather direct response but that is what I see.  There are certain pictures wherby the contrast in colors is more apparent so I see the numbers immediately but there are pages where it is really hard to tell. 

    The nurses then concluded that I had a colour deficiency.  A senior optometrist scolded the other juniors for simply concluding like that.  She made me take another test.  This one involved like mini paint bottles and starting with 1 that was blusih green, i had to find another bottle that best matches it, then another bottle that best matches the 2nd and so on.  There were around 15 bottles to arrange. They tested me 4 times.  All four times, I got 100 % so the fact that I was able to decipher hues of colours is already proof that I am not color blind.  They were asking if I had any other bothers who have the same problem or if my parents  or siblings have this problem.  I said I have no idea.  They were saying this problem was due to some error in my chromosome and that because I am female i will definitely pass it on to my kids too.

    Heck, I didnt say it out loud but how the heck am i suppose to even have kids with the medicines I'm currently under that causes birth defects?  When I asked anohter close friend of mine if she had problems with the clor test for her driving test, she said she had the same difficulty as me!  At least I know I'm not alone.
   
    The next day, they made me go back for more test and to get more senior doctors to give their opinions regarding my case.  One of the seniors said the arrangement of hues test is definitely more accurate than the Ishihara test.  The fact that I am able to get 100% 4 times is already proof I'm not color blind.  She just can't explain why I cant seem to tell what number is shown on the pages. 

    When I got home, I tried taking the test online and realized that the numbers are clearer if you dont look at it so closely!  That's why I can see the numbers now!  At the hospital, they just put a book in my face and asked me what I see.  That's why I just see colors most of the time.

    Perhaps I may have some colour deficiency but heck its not so much that I have to worry myself to death thinking I'm color blind.  The funny part was when the senior dr responded to the junior that he, the junior, couldn't tell what's the number on all the pages too.  Would tht mean he also has the same color deficiency as me? The senior said at least she can arrange the hues 100% every single time so that is no coincidence.

    Of course the thought did run through my mind as to whether my high degree of astigmatism had anything to do with my visual acuity, especially in seeing those numbers since I know my cornea isn't round.    I did ask the specialists if a neuro patient like me could go for Lasik to correct the high degree of myopia in my eyes but they are more concerned in me solving my neuro problem 1st.  They also feel I have MS and asked if I were on interferon but again I said no I am not on interferon since the doctors upstairs are keen to change my diagnosis.

    I've an appointment with the Neuro dr later today.  I'm going to ask her to fill out an OKU form for me since a friend is encouraging me to apply for that card.  I need to admit that I am physically impaired now.  if the card is suppose to help me in any way then I feel it will come in handy especially when I finaly resign from my job.  
   

Lack of Knowledge in the Medical Profession These Days

Unlucky as I am, I was just discharged from a government hospital today.  During the period, I witnessed first hand the lack of knowledge in the medical profession these days.  Doctors today graduate young, most of them lacking vital experience to even handle serious cases.

A fellow patient who is of age. staying in the same row as me has a swollen stomach.  Everytime anyone touches it, he complains of severe pain.  This afternoon, the staff pushed him dowm for an ultrasound.  When they pushed him back up, he started having difficulties and even with the group of drs and nurses around, they weren't able to save the man.  When his family asked what went wrong, the staff just said he started having difficulty and attempts to save him failed.

Just a thought to share, I suspect he may have blocked heart arteries.  As blood can't flow through, this puts pressure on the blood vessels causing vascular issues-swelling of the veins.  This can cause severe pain and was also perhaps the reason why his stomach was so bloated up.  How do I know about this?  Well someone I know faced a similar situation.  The doctor said he need to have bypass to unblock his arteries and reduce the pressure in his veins as soon as possible or he may die if his blood vessels/vein explodes.

I, on the other hand, was in the hospital for IVIG treatment.  Everyday, I've housemen and even more experienced doctors asking me if there's anything new.  I had minor chest pains since the 1st day but did not complain as it was considered minor to me.  The pain got worst on the 2nd day but I was still able to lie down during the drip.  By the 3rd day, I couldn't even lie down as the pain in my chest was just so excrutiating.  It hurts when I inhaled and even at the end of my esophagus-in my throat.  If I lie down the pain shoots up to my head too.  I was told by the doctors this is gastric.  I told them gastric pain isn't like this.  When a specialist camt to see me today, he also said I had Gastroesophogeal Reflux Disease (commonly known as Acid Reflux).  I told him the pain I'm feeling isn't like Acid Reflux but the response I was given was 'then what do you think it is' and I was prescribed Omeprazole (commonly used for ulcers, gastric and GERD).

When I got home, I decided to read up on IVIG Therapy out of curiosity.  The 1st site I found proved my point-Adverse effects are reported to occur in  about 15% of patients receiving it. Among the effects listed which I suffered from were chest pain. headaches, and shortness of breath (since I've difficulty even breathing).  These effects are not all bad.  It is a normal immune mechanism involved in healing.  The aggreagation of immunoglobulin in IVIG triggers this response.  I'm just shocked that none of the doctors knew about this.

I'm not out to point out who's right and who's wrong but I just wish doctors would humble themselves and discuss things with patients.  Communication is a 2 way process.  Knowledge is also a continuous process and being a doctor requires the candidate to be able to balance it all.  I know it takes years of hard work just to graduate in this line but as new advances keep emerging in this field, complacency gets a person no where.

Perhaps it's just due to my interest in Medicine and Health-realated issues that I read up on these things alot.  In the past, during my college days, I constantly attended health seminars/talks on various topics held at hospitals.  One of the Health talks I attented 4 years ago was on GERD. 

It Is My Right!

    It is my right as a human and citizen of this country to be entitled to proper medical care.  If a person is not provided with proper care as a result of some inequitable treatment of a doctor, action should be taken as a person's health is of utmost importance.
    Many people, even some whom you may think are so knowledgeable don't seem to understand what negligence is about.  They only know how to make comments that' this is a strong word and shouldn't be used simply'.
    WELL I'M NOT SO DUMB!  If I didn't know the meaning, then i wouldn't have used the word int he first place. 
    What I understand of negligence is from a legal perspective.  It is where one party owes a duty of care to another party but fails to perform that duty.  As a result, the victim (in most cases the plaintiff) suffers either physical, emotional, psychological or financial loss.  In the course of event, the plaintiff has made some sort of monetary payment, known as a form of consideration, to the other party for a service or item.
    I'm not a law major but was lucky enough to have had to study some law in the past.  Perhaps where a person is brought up really affects their personality as well.  I just can't sit back and do nothing when I know that I am being robbed of my rights.  So I voiced my dissatisfaction, contemplating legal action against those who have caused me grievious hurt and pain.  This isnt considered as being mean or cold hearted.  It is my right!
    But as you know, in Malaysia, people always try their best to cover their asses.  The thing is I was aware of how to counter the comments made.  All this would have caused plain embarrassment to the other party in court.  I mean what idiot would get a third party to give a recorded opinion whereby it can be heard in the back ground that there are people telling that 'third party' what to say! 
    Medical cases can be very controversial.  How to avoid all this is by being transparent and be willing to humble oneself to discuss witht he patient.  Too much arrogane and pride gets a person no where.  I hope people will learn from their mistakes.

Service Tax on Credit Cards? What About The Citizens!

    Our PM's statement that the government also needs revenue is understandable. But the manner in which it is spent is the issue.

    He mentions that the recent budget and reliefs offered benefits everyone and in return the service tax on credit cards is a form of revenue for the government.
    I do not benefit from any of the reliefs as I'm not in the taxable range. With my humble income, I do have credit cards and even had supplementary cards issued for my mother. Doesn't the government encourage citizens to care for their elderly parents? Wouldn't you consider providing my mom with the benefit of a supplementary card be considered 'caring'?
    Many people have highlighted their opinions regarding this service tax and it seems like the government doesn't even care. What ever happened to the saying of 'listening to the rakyat' or 'democracy'?
   There are many people who rely on credit cards for a living, whether it means using it for promoting it. Many people are indirectly affected by the implementation of this service tax as well.
    If our country really needs the money, then why are we busy helping other countries which are even out to harm our own citizen if we visit their country? The recent AG reports also highlight all the discrepancies and wastages of public funds. All this is the rakyat's hard earned money. Don't simply waste it and get more by charging this service tax!