April 20, 2014
as i write this entry, i have 5 more days till i take flight.
as i might have mentioned, i will be going to England. for the British Society of Rheumatology’s conference, as well as some sight-seeing in Edinburgh and revisiting London for my 3rd time. i will be away for 16 days or so. alone. and while i have been counting down to this trip, i am getting stressed up as it draws near.
there are so many uncertainties. i will be alone. i will be travelling extensively within England. i am pseudo-backpacking, yet i cannot carry a backpack because my back cannot take the weight of it for prolonged periods. i have to use a luggage, yet the luggage cannot be too heavy as i am moving everywhere on train and bus. the dilemma is that i have 16 days worth of belongings to bring, yet i have to carry light. this is giving me a headache. i am trying my best. i will reuse what i can, wash them if i need to, throw them if possible. but sigh. i will only know when Thursday looms.
it’s a little chilly there. will my joints flare? will RA kick a hissy fit while i’m there? if it does, can i walk distances, can i lift my luggage if i have to, can i cope with the pain? i will bring whatever meds i can. but there is only so much i can bring. what will i do?
because of the length of my trip, i won’t see my treatment team for a month. it hasn’t been so for a really long time. it sounds silly, but i’m scared. yes i will down my anti-depressants, my mood stabilisers, my benzodiazepines, my topiramate. but while i am there i am alone, i will receive work emails. i will muse, ruminate, spoil things for myself. whatever. i will cry even. i cannot control any of these.
and the food! oh gosh the food. and the lack of potable water. i have a notorious history of gaining weight from trips and i sure as well do not want to gain just because i am in beautiful England. no no no. it is not acceptable.
the last thing? i do not want to be robbed, pickpocketed, violated, etc. none of that. a little hard since i’m a girl alone in England. not impossible, but oh well.
will i have i good time? i sure hope so. will anything go wrong? i hope not. it is all not within my control. i can really only do what i can on my part. but the rest really lies on the circumstances.
April 19, 2014
would you lend a helping hand?
i finished my consultation with my psychiatrist on Wednesday, and had to rush back to work right after that. the path leading to the hospital is long, and going into it involves a long uphill slope. because i was leaving the hospital, i was going downhill in a rush, just to get to the bus stop quickly. then at the end of the slope i saw an old couple. the husband in the wheelchair, the wife pushing it. they barely got onto the slope, and it looked like she couldn’t even get started.
now if one would to take a glance and walk away, what would happen to the couple?
admittedly i deliberated if i should i help. but in the end, i halted in my tracks, and told the wife i would help to push her husband up the slope. i didn’t ask, not because i was being rude or bossy. i did not ask because they needed it. (all too often i’ve seen the elderly refuse help, only to suffer much more later on.) the wife was very petite. shorter and thinner in stature than me. she was generous with her thank yous. as i pushed her husband up the slope. i struggled. she told me about how her children abandoned them, after they helped them to get their flat. their children hasn’t seen them in a year, so she tells me! as i heaved and pushed the wheelchair up the slope, my heart ached for them. we chatted along the way up, because i was pushing the wheelchair and her husband up slowly and cautiously. by the time we reached the end of the slope, i was out of breath. i wanted go further by bringing them to the clinic, but the wife said no. they thanked me profusely, as i put my hand on the couple’s hands telling them to take good care.
i walked away and i looked back. i wished i could help them more. i was terribly out of breath, and it dawned upon me. “if even i had difficulties pushing him up the slope, and and if even i could be so breathless, what about her, the wife?” i could not fathom how it would have been if no one had stopped to help. a patient on a wheelchair going up a slope with a frail old lady pushing it can be perilous, if i dare say.
i didn’t write this to tell all of you the good that i do. i wrote this because i just wanted to say that if we were to all look around and observe a little more closely, you’d notice everyday that you’d see or meet someone who’s struggling. will you stop and stare, and walk away? or will you step forward and lend a helping hand? will you go out of your way to help a stranger, someone you don’t even know? will you put your hand on theirs to comfort them? will you lend a listening ear to a grieving soul? will you lend your shoulder for a tired one?
all too often i get told off for being ‘too helpful’. in crude terms, i am described as a nosey-parker, a busybody. words like “i wasn’t asking you!” or “i didn’t need your help!”, have been slapped right into my face with much scorn many times. but i didn’t yield. i did not stop. because the truth is, the people who need help far exceeds the number of people who reject you.
and of course, i would also like to ask. if you needed the help, would you want someone to help you, too?
April 14, 2014
i revived my old laptop that has been untouched for more than 2 years, and ‘lo and behold, this image that i created in Paint was still sitting happily in my laptop, left unsaved. it was as if it was waiting for me to uncover it once more, to remind me again (as always) that i am, in His eyes, lovely.
the going gets tough (hasn’t it always been?). the anxiety rattles me through and through, inside out. the lability of my mood gets me so discombobulated, that even my team seems puzzled with my current state. i went for 5 consecutive nights without sleep during the work week last week. new symptoms of parasthesia which i have no clue as to what the cause might be- RA, neurological, topiramate-induced? my right hip has gone back to its original state pre-triamcinolone shot. the CT thorax identified 1 enlarged lymph node, but nothing else. my probation review is due next week. i’m flying off for my rheumatology conference cum leisure trip to the UK right after that.
so well. we give some, we take some. and in the mean time, i’m trying my darndest to keep my sanity intact.
God will provide.
April 2, 2014
i’m exhausted, picking up the pieces from where i left off. that itself wasn’t exhausting, actually. i’m crumbling into pieces as i pick myself up piece by piece. so i go round and round. it’s a neverending process. and just when i thought the debris i was leaving behind was getting smaller, it in fact got bigger and haphazardly shaped. that is, if i were to not be careful, i would get hurt picking up the pieces with sharp edges that i started to leave behind. that is telling of how bad things have been going.
i’m in the process of recovery, or rather i’m trying to be in the process of recovery. yet at the same time i got arrows fired at me all at the same time. how am i to heal if i am to continue bleeding? sure i could smile or laugh as the tears fall. i do that all the time. but i cannot heal when i am hurt/injured.
as my mind is a work in progress, my body tries to defy all odds. as always, it’s a game of “whatever you can do, i’ll show you that you can’t”. RA and its whims and fancies is something that i can never get used to, and is something that people will never understand, no matter how you explain to them. the triamcinolone (steroid) injection i got in my greater trochanter just 2 days ago (refer to previous post) has gone kaput, and has officially excluded that anything in the greater trochanter, including the bursa, is the culprit. again as i said, it is a diagnosis of exclusion. and the pain in the piriformis will still be there until who knows when, how or why. *sigh*
on a happier note, a short story that i wrote has been chosen to be published in a book. it’s nothing about my life (everything about my life has been written on my blogs). i wrote it with hopes that i can help others, and i am only too glad that it has been accepted to be part of the book that can reach the masses. but for now, no details about it can be released, but i hope you are happy for me, with such a rare opportunity. :)
April 1, 2014
so here’s what’s been happening:
- my RA has still been active. since my transaminitis has resolved, rheumy has decided to restart MTX at 10mg and we’re crossing our fingers that i don’t get any transaminitis from it. SSZ stays at 3g.
- my piriformis stays inflammed for 14 weeks till date. because any diagnosis with the piriformis has to be of exclusion, we decided that we should go ahead with an injection of triamciniolone into my greater trochanter. if it helps, good for me. if it doesn’t, then we will have to go from there. it helped immensely in the first 1/2 hour, presumably because of the lignocaine. but once it wore off, damn it hurt, my hip. aargh.
- my axiliary lymph nodes have been enlarged for 7 months till date, and it has been worsening. i finally mustered the courage to ask rheumy if it is of any concern. i monitor it everyday, but when she started to palpate it, she couldn’t feel much. but she ordered a CT scan of my thorax anyway. i should think it’ll be fine, because i have no family history of malignancy. i, and maybe she, needs to be reassured that it is merely nothing like what i make it out to be (bordering on the hypochondriac side haha). and I WILL BE FINE. yes.
- just when i thought my ferritin level has normalised from 6 to 17, rheumy told me that the ideal is 40. such killjoy. and my TIBC is still abnormal. so back to IV Venofer i go. just one dose for now, but to hit 40? i think it’ll take another 2 IV doses on top of the already planned one. mehhhhh. serves me right.
- my psychiatrist has weaned me off completely off pregabalin, quetiapine and zolpidem. and thus my pain and anxiety levels have sky rocketed. my rheumy disagrees and wants me to go back on a low dose of pregabalin to help with my pain. so that remains to be contested.
- he increased my lithium in a bid to flatten my affect because he thinks i’m too reactive, and that my mood swings too much especially at work. he also added topiramate, which makes me amnesiac reminiscent of post-ECT amnesia. except that i cannot for my life recall vocabulary that i have known for so many years of my life. bah humbug.
it has been difficult juggling my health issues. and with work back in the picture, the difficulty level is something that i cannot handle. it is not something i can share the burden with. my rheumy understands my physical health. my psychiatric team understands my mental health. both parties are unable to integrate each other and see me as a whole. my family tries to be there. but i am really all alone. i try and i try so hard. there is no where to go. only forward. (my kindest doctors like my rheumy and cardiologist always remind me to be a good girl, and to try my best to not ‘go crazy’. it sounds insensitive, but i guess they only mean well.)
March 23, 2014
and now when i close my eyes, i have nightmares.
nightmares about going to work. nightmares about how i am going to be treated. nightmares about the words that are spoken that stab me like daggers. nightmares about the disapproving faces, the shaking heads, the wagging fingers. one of them was even telling me that they were going to terminate me.
i am reliving the nightmare i fought so hard to put behind me. (i never got to really put it behind me anyway.) i am scared, and inside of me i’m trembling with fear. that i may do something wrong again. or that i may get wrongfully accused again. that i will get berated at once more.
oh good Lord. i go down on my knees to ask You to help me through this very difficult period.
i’m going to either make it, or break it. perhaps even lose it completely. oh please no.
March 22, 2014
driving me to the furnace, past the scenery along the way.
you wanted it, it i gave to you. i was brimming with enthusiasm. in fact, it was even spilling over. i thought i could make a difference, but day by day, i learnt it was not to be. it cannot be, and will not be. i tried, and i tried my darndest. looked upon with disdain and berated repeatedly, i was confused. i was sad, and i got sadder by the day. i didn’t know what to do. i was doing what i was told to do, but i got lashed at anyway. what do i do?
i coped by holding it all in. i stopped trying so hard. mediocrity, if i could, was what i was trying to settle for. all in exchange for some peace and stability in my mind. but still it didn’t do. the usually uninhibited me is now inhibited, and it sure feels awfully disgusting. all the arrows kept coming for me. and there was nothing i could do but to let them penetrate me and hurt me through and through. i stand here now, bleeding from my insides, while everyone else’s lives go on. i cried and cried and cried. at my desk. outside my office. at home. in the consultation room. i don’t know how to make it better.
i am nothing but a mere speck of dirt on the ground for you to trample on, i know. i always am, despite what all of you say.
i’m leaving, as i soon as i can. and i mean it. because if i don’t, i’ll end up DEAD. maybe that’s what all of you want, ain’t it? me, dead? right from the start, back in 2010?