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the hearts of people are…

December 18, 2014

“Wah! Singapore so cold ah!”

He was referring to my thick fleece hoodie, my kind anaesthetist. I needed to remove it for him to inject my shoulders. After the “shock” i gave him in the Operating Theatre, i wondered how i should reply him. With jest? Or with seriousness. My deliberation caused me to hem and haw. And i finally managed to croak softly:

” Well, my scars…”

“Oh…” Came his reply.

In my mind going back to think and to regret what i’ve said, as i always do, i wanted to say something different that would reflect the opposite of his initial question.

Singapore isn’t cold. But the hearts of people are.

As some of you might well know, i’ve covered up my arms since falling into depression. “fat, and scarred”. Those are my reasons. Simple as that. People stare and they whisper. When i’m in a more intimate place like my work place and someone catches eye of it, a huge hoohah is made of it, as if it was something to be proud of. My social worker, J, always tell me that people stare not because they’re out to ridicule me. They stare at my scars out of curiosity. People gasp loudly and ask, because again they’re curious, and also because they care? Afterall, it’s not a norm, an arm sleeved by keloid scars. Can’t they be more discreet though, i’d always ask myself.

When i don’t like it, i avoid it. Anyone could tell me, including psychiatrists and all, to take no shame in it. That i shouldn’t be ashamed of it. But can i? I try to face it. There are inner demons too. It’s easy to talk. And to think that just simply saying something will make it any less of a struggle? It doesn’t work that way.

Right now, i’m just angry with myself. I’ve had my piece.

 

 

 

oh heart

December 17, 2014

I forgot to mention that my repeat 2D echocardiogram of my heart still shows a dilated left ventricle. LVIDd of 5.1cm. This is in comparison to 5.2 cm from back in July, Negligible? Yes to me. My ejection fraction(EF) has dropped from 60% to 55%. It once used to be 67%. I find it stupid and sad, despite my cardiologist’s reassurances. I work in a cardiology, and i roughly know what that means, And my mitral valve regurgitation which was once trivial? It has turned to mild.

The last one, trivial mitral regurgitation, is very common in people actually. So we used to just brush it off. But now now that it has worsened to a mile stage (where there is then the moderate and severe MR after), we have to observe for symptoms.

In my mind, i asked myself, if i’m already breathless, it’s pretty hard to tell if my breathlessness gets worse when my MR gets worse. but oh well. whatever.

it’s not that i don’t care about my heart. i just have better things to care about. things that need to be addressed and can be changed.

oh well. *shrugs*

steroid load

December 15, 2014

image

 

a morning photo before my appointment to see my anaesthetist, i realised my cheeks were getting “rounder”. i posted this photo on Facebook saying i have a chipmunk face. looking back at my selfies, even to just 2-3 months back, i didn’t have it that bad. i admit i have a predisposition to a “fat face” look due to my face shape, but still i wondered why. yes yes i know i gained weight, but it shouldn’t look like that. (the pursing of my lips was already making my face look smaller!)

then during my consultation with my anaesthetist, he tells me something that sent alarm bells ringing. i think i know why!

“STEROID LOAD”, he said. he was reluctant to inject my shoulders with triamcinolone because just 3-4 weeks back he had just injected shit loads of triamcinolone into both my sacroiliac joints, and some in my nerves. he explained that steroid load is something to worry about. he asked me when my rheumy had last injected my shoulders. end of September, i told him. then i realised that early in September, i also had triamcinolone into my nerves.

damned. i’m a nurse, and i could forget that triamcinolone, even when injected intra/extra-articularly, has similar effects to oral steroids? and it’s a “double whammy” because each time i get injected, it is bilateral. both sides means it’s double the dose my system absorbs. i remember the amount of triamcinolone i got for my SI joints was… dismal in that my steroid load hit sky high.

i am experiencing the exact same crap side effects that i did when i was on oral prednisolone 20mg for that whole year when i was diagnosed with RA. weight gain, a humongous appetite, moon facies (all which preceded my eating disorder) were the most obvious ones that made me swear off them.

that being said, i still had both my shoulders injected with triamcinolone in the sub-acromial space. the flares in them were fucking excruciating that i told him i couldn’t wait till late January to see my rheumy to get them injected. oxycodone wasn’t helping, and i have no anti-inflammatories.

*facepalm*

for someone who has sworn off steroids, i got a LOT of it this year. and i’m disappointed with myself. although i’m not sure if it’s because of my ignorance, or that i needed that much, or simply both. the problem now is that knowing how well these steroid shots can work sometimes, how do i say no in my pain management?

how do i find that balance? or is there only one answer, which is NO NO NO?

oh what a bummer. i need to lose the weigh i’ve gained in the past 2 months. i’ve already got comments. pfft.

sunday morning musings

December 14, 2014

1. guilt is a terrible feeling, even though you know you’ve said sorry and your apology has been accepted. and if you don’t let it go, it will eat you up slowly.

2. you only learn when you make mistakes. that means you are doing. but people will make you feel like mistakes are not allowed, as if they themselves do not commit them. and that sometimes make you wanna stop trying and even doing. you are not perfect, neither are they.

3. if you know taking your painkillers will make your sleep better, take it and not be lazy just because you’re already semi-asleep. just that little trouble will spare you hours of agony with your eyes wide open wondering why you are so uncomfortable.

4. be accountable to your boss. he has the right to know what happened to his patient. tell him early. sometimes it makes things easier, even if it’s something wrong you’ve done for your patient.

5. sometimes you hate your parents, and they nag too much at you that you want to scream your head off at them. but they still love you (i think). and things you ordinarily won’t do for them, they’d do for you, without asking for anything in return. if only you’d ask.

 

to be in a state where physical pain does not exist is so precious.
it’s like cupping a heap of sand in my hands.

sand is slipping through my fingers.

today everything is starting to hurt. my neck, shoulders, back, and all possible referred pain from my sacroiliac joints. but actually some have already been creeping in insidiously for several days.

i’m tired.

i try not to think of forever. there’s no cure.

alas, the burden is too heavy, but i still have to bear it. the pain is creating a storm.

 

 

under the blanket

December 8, 2014

it’s like an old cassette tape having to be re-wound painfully again. history replays.

except that i do not know what will happen this time round. yet there are new battles to fight. will they ever end?

and my insecurities are so strong such that it makes me deliberately forget that i am even trained to be a nurse.

i’m hiding under a blanket in darkness. it’s more comforting here.

 


 

 

write it all off. tear it into pieces. flush the pills down the bowl. pretend they never happened. i am not here. i do not exist.

my effort and yours

December 4, 2014

effort.

what is effort. how do you quantify effort. what is enough. what isn’t enough. and who has the right to judge.

you (read: a certain many people who have tried to come and go in my life, and also some who’ve still been trying to poke) have absolutely no damn right to comment on how much effort i put in to something, and therefore are also not allowed at least to say in hearing’s distance, that “i am not good enough”, “it would not suffice”, “it will not do” etc.

it’s my life and mine only, not yours, and therefore you would, and i can guarantee, not know how much effort i’ve put into something. if you say you know, you’re a big fucking liar. because even my mum doesn’t even know!

i’d like to say every person is different, and every person is multi-faceted, like a diamond (i’m not saying i’m a diamond here though please). and you might only know a fraction of me. vice versa. you’re missing most of the picture and you can’t say that you know what the picture is saying with just that small bit of clue. it’s not fair to me, and it reflects badly on you.

everybody is fighting a tough fight. some a smaller battle, some a World War. please give the benefit of doubt when you can unless i have been incredibly dubious in my efforts. you probably do not know i’m fighting a war with gunpowder (mind you), and that’s because i do not know you well enough. that does not entitle you to giving me the full assumption that i do not put in any effort at all. you should probably at some time, realise that i am not fucking obliged to tell you anything and you put it on me to tell you my 4 year war history, when all would have sufficed is erm, just 1 paragraph. again that points back to you as having such terribly low EQ.

when i say i am ok, i am ok enough to say i am ok. full stop. there is nothing more than there is to it. do not read behind, between, in front, or whatever, the lines. just take it. i’m already making an effort. unless i am crying. then pull me aside, tell me i am lying, because i jolly well am. if i say i am ok but i am not, i probably will not go to you anyway. you are not an option.

don’t take more credit than you should. as much as you have been so terribly understanding of me and trying to figure me out like a puzzle because i gave you a paragraph and not a 4 year history, please also remember that in keep a lot more to myself than i should, i fight a lot more silent battles, and i don’t find excuses for anything, anytime. i don’t take credit for that. so yeah, shame on you.

and for the amount of effort i put in for someone who is actually is physically sick and psychologically unwell, i think i get to triple my points by default, and then get to slap you after that.

 

i end here by saying this, that in my life i’ve tried, and i’ve tried so fucking hard. i have enough on my plate at 24 years old, and i am happily single for goodness sake! rheumatoid arthritis, fibromyalgia, major depressive disorder, bulimia nervosa, a dilated left ventricle (still, after a second recheck), and now mitral regurgitation that worsened a tad. these are enough to keep me busy, and by these i already put in effort to keep going and functioning. my day’s pills might be more than your half a month’s. it’s simple as that.

and yes it is not fair to berate these people if they do not know i am already fighting so hard.

but please be gentle.

please. for everyone has their own demons and battles.

i cried. because i put in too much fucking effort, to be told off and written off like this. and even oxycodone couldn’t take that pain away.

 

 

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