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?
March 9, 2014
yesterday, which was the day that marked a month back at work, i hobbled to work awkwardly with a 3rd leg- my walking stick. it was quite a sight i think, to anyone who saw me in such an awkward combination of work clothes and a cane so frequently associated with the elderly in Singapore. the whole way to work, my heart was in my gut. i was ashamed and embarrassed. and it shouldn’t have been so. i was so utterly disgusted with myself, for being so weak, a pussy who cannot take pain.
but the reality is, i am in pain, and i am fucking sick of it. the walking stick was bought and has been in cold storage for a long time. 2-3 years i think. even though my knees, ankles, feet and toes are all involved in the RA disease progress, i have always been able to accept walking (and even dancing) with them flaring. but the hips? every single movement of the leg elicits pain, and it is excruciating. and lately, my piriformis muscle has been inflamed. my rheumy pointed that out to me. she didn’t tell me why it is. only said i needed to stretch and strengthen it. i have, but it still hurts. it’s the sacroiliac joints. the joints that have bothered me for so long, and has been ignored since the x-ray reports led the investigation into a cold trail. and now that i have been totally weaned off pregabalin, i am sinking in a sea of back pain. referred pain. whatever you call it.
when i finally got to my desk, i put the cane aside, and never looked at it with hope again. it helped me to take the weight off the hurting hip. but the physical relief wasn’t worth it. i am not ready to surrender just yet. or maybe i just refuse to admit that i can’t cope with a dysfunctional body, and a mind that refuses to accept that i am different.
i don’t know what to do. there isn’t a pill for everything. it’s been over 2 decades. no remission. repeated hepatotoxicity. functional deterioration. fuel for depression. yet i am not sick enough for more aggressive biologic agents. it’s not like i can afford them anyway. i want out. but there’s no escape. no reprieve. nothing. and i am all alone. they don’t get it.
March 8, 2014
it’s been just about over 130+ days out in the wild, and this by itself is a feat accomplished. i think?
the last time i could surpass this record was back at the end of 2011, and that was before i graduated from nursing school. it’s been that long eh? since March 2012, i couldn’t last past 4 months out in the wild. sometimes it was a mere day. other times 3 days. rarer were weeks that went into a month or more.
maybe i am better now. but maybe i am just desperate. the last time i could last more than 4 months (which was back in 2011), it was out of desperation to graduate from nursing school. and that actually only lasted just a little more than 5 months. this time is no different, the desperation. the desire to live a true life out of a hospital and in a reality that should be life. not the life spent in a an artificial environment, relying on strangers to preserve my life, pills and electric currents even.
can i hit 6 months? or even a year?
i sure hope i can. it’s been too long. far too long.
all these days out in the wild has never been easy. but i guess with each passing day, i grow a little. of course there are days when i shrank, and with no doubt, disappeared. however the sun must set to rise, even when the darkest nights fall. a flower can only bloom when there’s rain and shine. it can’t, if there’s only either one. right?
one step at a time, Steph. the next milestone i am aiming for? 180 days.