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10 years

seeing my anaesthetist today brought back  many memories. the waiting, the feeble attempts to get my point across to the doctors, the plucking up of courage to ask for something, the decision to say yes to another medication, the sigh that comes with resignation…

it’s been 10 years since i begrudgingly said yes to my first diagnosis of RA and the treatment that ensues. the fuss over waiting times, doing blood tests and unpredictable results, imagings, complications, ever-changing prescriptions, side effects, new symptoms, rehabilitation, and the costs of everything. most of all, it is the constant struggle to carry on. but God gives me the grace to trudge on, to embrace the pain as it continues to keep me rooted to the truth in the cross. and most of all i am reminded to be gentle with myself. nothing comes out of being hard on myself, except bitterness and frustration. in the midst of these all, i am called to say yes always; to bear this cross with love and gentleness!


i was restarted on topiramate again to help with the constant tension headaches. bummed that my pill burden cannot be lessened despite my efforts in the last few years. i asked for trigger point injections in my back because it’s been killing me for many weeks now. so he gave me 2 bupivacaine shots. i was asked to try accupuncture and of course physiotherapy. couldn’t escape the question about exercise.


i can’t seem to escape the pill burden that’s haunting me for the past decade. i’ve tried deprescribing over the last few years, and while i’ve succeeded sometimes (especially with DMARDs), it somehow gets undone insidiously:

  1. Paracetamol+orphenadrine
  2. Etoricoxib
  3. Tramadol
  4. Metoclopramide
  5. Ergotamine+caffeine
  6. Topiramate
  7. Escitalopram
  8. Lithium
  9. Clonazepam
  10. Quetiapine

it still stands at 10 now, the number of prescribed drugs. and it drives me mad. but it’s ok; i’ve had worse. once again i am called to say yes to this struggle that comes with the cross i’ve said yes to carrying.


all these years struggling with pain has hardened my heart and made me bitter. i guess it’s time to reexamine how i will be coping with something that is inevitably a permanence in my life!

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what you don’t know

  1. RA and fibromyalgia changes a person. living with chronic pain does that to you. it makes me embittered and disillusioned with life and the healthcare system.
  2. Chronic pain means that i carry a pouch of medications in my bag always. Painkillers that go up the spectrum in its strength. Topical painkillers. Anti-emetics in case the painkillers make me nauseated. Anxiety also means i carry with me benzodiazepines (usually clonazepam). Without this pouch when i’m out, i’m practically nothing.
  3. RA is an autoimmune disorder, and it can only be managed (put nicely, put in remission), never cured. And there was nothing i did to induce such a chronic and debilitating disease. Mine started when i was merely 1 years old.
  4. Fibromyalgia is a legitimate illness. It is not a diagnosis placed on a person if a doctor can’t figure out what a patient is going through (i.e. garbage diagnosis). No my pain is not psychosomatic. No my pain is not because i’m doing everything wrongly (posture, ergonomics at school/work, the way i sleep etc), No i’m not lazy, i’m just perpetually exhausted/fatigued despite the amount of sleep/naps i get.
  5. I don’t find excuses because of my illnesses. I try my best even through the pain and the exhaustion. Heck it even takes courage to admit that i am giving something up, or if i have to say no, when i feel my disease involvement is really being tested and exacerbated.
  6. i have chronic depression, and it happened (and still persists) not because i was weak. it started in 2010 because i gave too much of a damn about something- something that i was passionate about, and was good at, that pride took over. at that point my eating disorder was in full swing for a year already, and it didn’t help with the stress and pressure i faced.
  7. i fight. and i don’t stop fighting. i fought to finishing nursing school, and fought to finish it well. i fought at and for work as a nurse. i gave up my career as a nurse because undue pressure and sanctions were placed on me just to validate my license. it triggered me everytime i had to go down to board’s office to submit the letter from my psychiatrist.
  8. the people who are in the caring profession are the very people who perpetuate the stigma of mental illnesses. this was something i could never understand.
  9. i’ve lived in hospitals- medical and psychiatric- for a total of nearly 3 years. it takes courage to go in, to admit that i need help. it is not attention-seeking behaviour. and to be honest, all these time in hospitals are the ones that kept me alive.
  10. and yes, as much as it seems the opposite, i am fighting to live. i subjected myself to 63 sessions of electroconvulsive therapy (ECT- in layman terms, electric currents that runs through the head), because i struggle with chronic suicidality. if i seem forgetful, this is why. amnesia is the primary side effect of ECTs.
  11. i’ve been labelled as the “worst case” my psychiatrist has seen, “the most difficult patient” my psychiatrist has had. 70 over sessions with my psychologist yielded almost no effect on my mental health. so pardon me if i think i am a hopeless case.
  12. people have asked it, and implore you not to ask it nor even think about it, why i am “still like that”. do you actually think any sane person (yes i am very much sane) would want any of this bullshit? if i can have it my way, i want nothing of this.
  13. i am always fighting to manage my conditions, and that includes working towards recovery. sometimes i am able to muster the strength to stay relatively well (usually from extrinsic motivations). but it doesn’t mean that i’ve done it before, that it cann be replicated. circumstances are always different. and not reaching recovery doesn’t mean i am weak. it means i’m still fighting. whether it is me managing my symptoms because that seems to be more important at that time, or whether it is me fighting my demons because it feels like i’m well enough to work towards recovery.
  14. i am always seeing doctors, and again this is not attention-seeking. i see a rheumatologist, a pain specialist, a psychiatrist and a psychotherapist (who’s also a psychiatrist), with the occasional visit to a gastroenterologist, a nephrologist, a neurologist etc. i am for the record, not the healthiest person around, and no i did nothing to deserve anything that warrants these visits.

  15. when i cancel on you, it does not mean i’m not keeping my end of my promise. it usually means i’m exhausted through and through, either from the disease process of RA, fibro, or even depression. or it means my mood has plunged, and/or i am crippled with anxiety that i can’t leave the house.
  16. when you see me smiling and laughing, talking (sometimes loudly), walking with normal strides with my head held up, 99% of the time it is a facade you see. this facade is quite true to my old self. and it takes immense energy to keep the facade up.
  17. when you see me turn a little quieter, becoming more reserved and isolated, head down, and walking a little slower, it means the energy that’s keeping up my facade has run out. it means you are seeing a more genuine side of me, and honestly, i’m not fun to be with once this occurs. it can dampen the spirits of everyone, and i don’t mean to do that.
  18. i am easily triggered. when i see images or hear about things like suicide, means to kill oneself (like ropes, pills etc), and all, i immediately withdraw. it can mean that self-harm will come later, but that’s just the way i am. i am extremely sensitive.
  19. when i bare my arms to you, it means i trust you enough not to judge me. i am not proud of my scars. but i don’t want to tie it so much to shame as well.
  20. it’ll be difficult to accept me because of the way i butcher myself. but i always hope people can understand that self-harm is my way of coping, of self-regulating. it’s just like how people turn to alcohol, drugs and ciggs. and if you have questions, i really don’t mind being asked, as long as it is done tastefully.

it’s difficult for people, and even my doctors, to see how pain is inevitably intertwined with depression. everyday is a battle for me. i start off my day downing anti-depressants and a cocktail of pain medications. it’s a judgement call to make, for how much pain medications i need to start my day. a painful day makes for a very moody and/or angsty day. on the other hand, there is no happy pill. when i’m anxious, i pop a clonazepam, but it doesn’t make it go away totally. sadness, despair, distress and worry usually accompany anxiety. and if i can, i lie down, hide under a blanket, an try to sleep it off. if i’m out, i try with all my might to get home to do precisely that- hide and sleep. the worst is when my mind decides that my life is not worth living. there is no anti-suicidality pill. there is only self-injury and ECTs. i don’t hurt myself for the sake of it. ironically i hurt myself to stave off the suicidality (at least when i’m not inpatient), and it does help. it’s difficult to believe it, but it really does help. it helps me to at least live till tomorrow. and sometimes that’s all that is important right?

everyday is still a day of self-discovery, of learning who i am and what i am. everyday is a chance to be stronger, more resilient, more accepting, and a chance to desire living instead of dying.

my friend from my community described me as a fighter, as do many others, in different ways and words. i constantly deny them, because depression tells me everything otherwise. but for the past few days, i’ve thought about it. if i hadn’t fought, even as a child with undiagnosed juvenile RA, would i be here? if i hadn’t fought through the pain even as it progressed into adulthood, and then also fighting with fibro, would i be here? if i hadn’t fought with depression and bulimia, would i even still exist? it answers it all.

lastly, without my faith in God, i am nothing. He was the one who carried me through all these years, giving me the strength and courage when there was none to go on. He carried my crosses (which are my burdens and struggles) with me, and never left me even when i turned the other cheek. what can i say? God is good. God is Love!!!

The Lord will fight for you, and you have only to be still. -Exodus 14:14

You will ever be

it’s been 9 days. 

in these fights- the ones against my mind that threatens everything in my life, against my flesh, against the doctors/nurses, against the system, and now against my own body- i’ve been seeking God. 

i’ve asked myself endlessly where is God, in all these pain and anguish. still being in a spiritual desert, i found myself praying the Chaplet of Divine Mercy while inpatient. it gave me a peace of mind, but it ended there. i struggled to hold on to those graces granted. but alas, it was not enough for me.

because i had told my community Sinners before these 9 days started, they’ve been praying for me. but in my anguish i felt undeserving. i was not “really sick” even though i was unwell. i was ashamed even, because it had all started when i decided to turn savage against myself. i was the perpetrator, the sinner here. who was i to be prayed for? i continued to feel deeply this shame, although i was grateful for the prayers. but in my suffering i feebly found strength in the Bible, and in the life of St John Paul the Great.

on day 7, i was finally liberated. i say that because in these 7 days i was technically held under the law. i was ecstatic. i did some shopping, and had a fantabulous dinner with some of the Sinners. and guess what? on this joyful day i did not even take a minute to thank God for his graces.

on that very same night of Day 7, shit happened (really, for the lack of a better word). i felt like the whole night was unsalvageable. i dare not ask for God’s intervention for the 8 hours that i literally fought a battle in my room. it was me, against my failing flesh, and the bloodshed in my room. i did not stop the whole 8 hours- I was either trying not to exsanguinate, trying not to lose consciousness, trying to clean up the horrid mess, and clean myself up. where was God in this entire self-inflicted and self-deserving event? i don’t know, but He must have been there with me. it could have gone a lot of worse and things could have gotten very awful.

into Day 8, i got into trouble again because of my obligation to see my psychiatrist on my appointment. that’s the power of psychiatric hospitals. i spent 10 hours navigating the system in both psychiatric and medical hospitals, and at the end of it, i walked free out of the psychiatric hospital. where was God the whole day? i did not seek Him out, but through my friends from Sinners, His grace and love emanated in the words and actions. yet at the end of the day, again i did not stop to give thanks to my Saviour Lord.

Day 9 came as a shock for me. i had a difficult week fighting a myriad of people, emotions and things. i only wanted to rest. but alas i woke up with my left leg, weak, numb and tingly. history happened again. i called to check if my neurologist was around, but he wasn’t. i ended up in the Emergency Room again. i was fortunate enough that my symptom wasn’t brushed off as an orthopaedic issue. they took me seriously, after giving them my history with this symptom, my falls, my encounter with a neurologist, and my MRI of my spine. it was very real, and the doctors ended up admitting me. while waiting for a bed, they sent me for an MRI of the brain and cervical spine. i sighed a breath of relief as these would be the ones to give the doctors the best idea of what’s going on. in this period of about 18 hours, my leg symptoms waxed and waned, although i still required my forearm crutch. but still i thank God for being by my side through this. medical issues are less predicatable than psychiatric ones, and without God guiding my way, i would have felt so lost.

i know i am superfluous with my words. but in this post, i wanted to write about these “adversities”. i could think that God is absent, or that me being spiritually dry, i can’t seem to see, hear or feel Him. that because of these i stopped praying, and i glance over what He can do and tell myself that He won’t do it for me. that because of the wretchedness of my trespasses i am not worthy of Him, or even the prayers of my friends to Him.

but i am wrong, and perhaps subconsciously i knew that too. i want to give thanks to Him for these 9 days of tribulation. i want to thank Him for this sufferings, because i know with these i am a better person. i want to thank Him for walking with me, for bearing my crosses with me (and not for me), and for sharing my pain and burden with me. i want to thank Him for His unending love and mercy, for the faith He has in me and for the faith He gives me. i want to give thanks to my good good God for loving me when i am most unloveable, and even when people think that of me too. 

i am flawed. i am unwell sometimes. i do unfathomable things which are condemned by many who believe in the same God i do. i find myself extremely wretched. but God sees past all of that, and he does not discount the reality of my illnesses and the suffering it brings. He stays, and He never wavers. He never flinches, even if He sees me trespassing the flesh He so lovingly gave me.

God meets me where i am. in my wounds, in my sadness, in my pain, in my illness, in my encounters with others. 

perhaps when i feel spiritually dry (as i do now, and have for a few months), it’s not much of seeking Him, but simply knowing that He is there. it is our hunger, our thirst for Him, that draws us even closer to Him even though we still don’t feel Him. He is here, if only one remembers to desire Him and everything He stands for.

perhaps one of my favourite Bible verses:

But he knows the way that I take; when he has tried me, I shall come forth as gold.

Job 23:10

rotator cuff tendinitis

image

 

in the ultrasound image captured on film above, it compares the supraspinatus of my chronically painful right shoulder to the less affected left shoulder. following the indictors that mark distance, and looking at the bottom left where the numbers are shown, it says that my right supraspinatus is thicker than the left by about 0.11cm.

yesterday as i left the hospital, i looked through one of the private hospital’s directory (the one that i only ever go to actually) to look for an orthopaedic surgeon. i didn’t have an idea who i could see, so i looked at the directory, looked at who’s good at the shoulder, and oddly also whether the doctor’s face is endearing (this is very important!). and so i settled on one and tried to ask if i could see him. yesterday wasn’t possible, so it has to be today. i am that desperate with my shoulder.

i saw him today, with merely an ultrasound report of my shoulders from 2011. i told him of the problems i was having, my history and what i’ve been getting and given. he did a PROPER physical examination of my shoulder, and it’s true that a physical examination can give the doctor a lot of clues, oft times accurate ones too. as we discussed what can be done to see what it really is, i just had to ask him what he thinks it is, although it’s really too early to tell. he said honestly that it seems like a Rotator Cuff Tendinitis or Tear. WELL NOBODY TOLD ME THAT FOR 10 YEARS SUFFERING FROM SHOULDER FLARES. i’ve only always been told it’s tenosynovitis/ bursitis.

i managed to, not that i was imposing, convince the doctor that perhaps an ultrasound of my shoulder today will do some good. he did agree in the end, because he gave me a solution of injecting my shoulder with steroids, and he thought that if the ultrasound excluded anything in the subacromial space, then of course it would make more sense to go into the glenohumeral joint. it couldn’t have been vice versa though. he, like my other private doctors, always advocate for getting things done in the restructured hospitals if i am a subsidised patient,  didn’t recommend didn’t a MRI. i pushed for an ultrasound (although the doctors at the hospital yesterday ordered for one) because i just wanted to have an ease of mind knowing that it is something benign, or rather something that i feel i can tackle head on. and so i did, and it was a day of waiting. it wasn’t too bad though.

when i returned to see him with the report and film of the ultrasound (i already had a look at the film and i was guessing thickening, but could not correlate), he said it was definitely Rotator Cuff Tendinitis. so from there i would get my jab of triamcinolone+lignocaine in the subacromial space. i did ask him what am i to do if it persists, seeing that i’ve already failed oral medications and 3 intra-articular steroid injections. his recommendation is that the next step is physiotherapy. and if that fails, then i should look at surgery. SURGERY??? 😦

i cringed at the thought of physiotherapy. if i couldn’t get rid of the pain, i don’t know how i could start on physiotherapy. i gave the go-ahead for the injection anyway. how weird is it that i miss the feeling of the needle piercing through the shoulder anatomy, and the feeling of the drugs being pushed in? maybe it’s been too long.

anyhow, it must have been God’s grace that i met this doctor. the whole time i was talking to him, he needed to know who my rheumy and anaesthetist was. and when i spoke of them, he seemed to know them. nearing the end of the consult, i asked if he was from that hospital (you know, the one which i used to work in, and the same one i’m a patient in), and he said yes! i actually told him that honestly, i’m scared that i’m gonna get scolded by my rheumy for not heeding her advice by getting a joint injection outside. but he told me to mention that i saw him to both my doctors, because the both of them would know him and it would not be a problem. REALLY???

and so when i was getting ready to leave and had to make payment, the doctor told his staff to waive ALL charges except for the drugs used in the injection. i couldn’t believe my ears! because i know the consultation fees were at least $200, more perhaps because i spent quite a bit of time in his office, i was trying to get a discount by “pulling strings”, citing that i used to work upstairs (it works like that, when you are the ex/staff of doctors, the other doctors tend to give you discount). but in the end i think he waived off everything because i was a long-time patient of 2 doctors he knew from his old work place.

grateful.

i know i will have my share of critics for doctor-seeking, especially since me coming out of the emergency room only yesterday. i’m not finding excuses for what i’m doing. but i do this because i need and want the help that only doctors can give. my problem was NOT remedied yesterday. remember the IM diclofenac injection that was given to me at 2.15pm? by 7pm, i was flaring all over again and i was in deep regret for what i put myself through. i already knew it wasn’t going to work well nor for long, but i didn’t know it was going to be that bad. as a chronic patient i choose to be proactive in seeking help for a joint that’s “crying” for help. and while i know my joints are always crying for help whenever i flare, i also have to give them time and myself the patience to endure the pain, to tell if they truly are in trouble. this shoulder is the first, and it has been taken very lightly. mind you, me raising the issue of this shoulder pain wasn’t even this year. it started way back since last year.

being in the system as a patient for long and having worked in the system, i know how it works and goes. me resorting to the private system is me waving the white flag and recognising that the doctors in the private sector have higher priorities for their patients (although i cannot deny they have priorities for costs too; but now 4 of them have waived all costs, except for drugs!). i know that at least when i’m in their care, i am taken care of, and if i need to be treated, then i’m treated! but the reality is, i cannot afford to be treated by them long-term, and that’s why i am still cared for in the hospital.

now the only thing i hope is for the steroids to quell the inflammation in my shoulder. i have to await my rheumy’s appointment next Wednesday, and till then, i have to see how it goes. i hope this steroid injection lasts me for loooooooooooooooong, and not the mere 1-2 months like it has always been.

17 hours for a 10 cent jab

image

an entire life of RA, and it’s my first time going to the emergency department (EMD) because of RA. i’m just 2 weeks shy of my 25th birthday.

my shoulders have been impossible to live with. as if being denied the intra-articlular steroid shots to them weren’t bad enough when i saw my rheumy, they seem to have gotten worse with the reinitiation of methotrexate.

the last few days have been incredibly hard on me too. i’ve been getting a lot of constitutional symptoms like malaise, loss of appetite, and this time also weakness. then due to me beginning cradle nursing my palliative patient, my fingers and back are blowing out too.

because of the unrelenting shoulder flares that best optimised medications cannot even treat, and of course due to the past few days, i had to grit my teeth to come in. i had worked for 9 days straight, and my shoulders cannot take another.

now, the problem is, how do i find my way through the system and come out of it with at least one of my goals met? i was going to find out that the system, including the doctors and nurses, abhorred people like me. it was not said to me, but i felt the countertransference, and i definitely received it in all its raw glory, their utter dislike for having to handle patients like me.

2000hrs
just finished triage. i start to wait to see the medical officer. i was very miserable as it was cold and i was flaring everywhere. i asked for at least 1 heat pack, and they had none. they could only improvise with a glove filled with warm water.

2230hrs
i finally get to see the MO after 2.5 hours. initially, the MO was very respectful and kind. he tried to find ways to help me, but anyhow i told me i was not leaving this place without at least pain relief for my problematic shoulder. but after maxing out  most oral analgesia, which is also all possible analgesia for a person, his solution after seeking an opinion from a senior doctor was to give me the balance of what’s left for the day that i hadn’t taken. then he told me he hoped it would work, honestly he doesn’t know what to do if it still doesn’t work. i was given a bed in the observation area.

0000hrs
i had to wait yet another 1.5 hours to get mere tramadol 50mg and oxycodone 5mg- the balance of my daily dose- given to me with the rest of my usual night meds.

0130hrs
the MO came to review me to see how i was doing. after telling him that the pain in my right shoulder and back has increased, he is telling me to just tolerate it till morning rounds, which is some grand 6-8 hours later. and when i asked him why, he said it’s because i’m smiling, and it doesn’t look like i’m in pain.

i flinched at that. it’s a wake up call again that hey, i’m not normal. i’m a nurse myself, and i know it when patients malinger. so of course when i am smiling and say i am in pain, others will think i’m bluffing right? right.

the fact is, and i don’t know how to get this across to the MO, that yes it hurts more in my shoulder and back. but my feet, wrists and fingers are better now. i don’t know why i’m smiling, but perhaps i’m lying in a bed now, as opposed to sitting in a hard chair for 2.5 hours before i saw him earlier? can’t i be more comfortable, yet be in pain too? can’t it be more, yet less at the same time?

i’ve lived a life of pain, and yes it’s oxymoronic and conflicting at times. how things have to be, how things turn out. it’s just like that. pain changes a person. a chronic pain patient could say her pain score is 2, when it’s really 10. she could also say it’s 10, but not show any outward sign; not even in her vital signs. either way, she doesn’t show it. she’s learnt and known for so long not to show it. so what do you want, MO?

what can i do to make you believe that i am for real?

he said he would check on me an hour later again to see how it is. i could sense he didn’t want to have to deal with the persistent pain.

0400hrs
no signs of MO. i chased the nurse for the MO to see me. i had to pester, and then was told that the MO had left and has handed my case over to another MO. by this time, i was relatively pain-free in the rest of my body. it was more focal on my shoulders.

0600hrs
no signs of MO after the ‘promise’ to review me at 0230hrs. so technically, it has been 4.5 hours since the MO reviewed me when i was last in pain. and no one bothered to even check. did someone forget that pain is the 5th VITAL SIGN? i had to threaten that if the MO is not going to review me, a complaint will definitely be served. so he appeared. he had the cheek to ask me what i should tell him to do. i’m not the doctor! i told him off about how he was taking such a laissez faire approach to me, a patient with acute on chronic shoulder pain, that hasn’t been relieved with all oral medications. i said to him that just because i’m a chronic pain patient, he cannot ignore and think i’m “malingering”, just because i don’t show my pain outwardly? he just defended himself by saying he’s a lot of patients to see. you mean you cannot even spare 1 minute to see me? the EMD is not a big place for goodness sake! at this time i was served a dose of Panadeine (paracetamol/codeine) and my usual dose of Myonal (eperisone). he told me, “isn’t this enough?”. so i asked him, in his factual judgement, if this is sufficient for me, looking at my history of pain and the pain medications i’m on. he said factually, HE DOESN’T KNOW. so i told him, “let me tell you factually, IT DOES NOT WORK!!!”. he went on to repeatedly asking me what he can do for me. in the end i suggested an IM jab of an NSAID like ketorolac. he walked off.

0730hrs
i asked the morning shift nurses if i have any medications. they told me with much nonchalence that i had taken my medications. i said no, they aren’t even my usual medications. and the MO said he would order something IM/IV. i wasn’t even getting my usual doses of tramadol, oxycodone, pregabalin etc. they told me they would ask the doctor.

1030hrs
i still am not served anything. i was told that alas i was going to be seen by the pain doctors. BUT!!!! they are doing it differently! they decided to make an appointment for me with the pain senior consultant in the clinic, discharge me, and send me on my way up, that’s a really quick way to absolve themselves of a “troublesome” patient”! i demand to be given my medications, and i so i am given. i think they were more efficient in the last hour because they couldn’t wait. but sigh. yeah my usual morning meds, including 50mg of tramadol. they missed out oxycodone (as usual because it is a controlled drug) and Celebrex.

1100-1445hrs
i spent almost 4 hours in the pain clinic. it’s a clinic that i was familiar with, but today, it suddenly seemed so foreign to me. i was first seen by the MO who has to try to get the whole picture right. usually chronic pain patients have a long history, and although i already have a record with them, my own pain consultant wasn’t around. so it seemed like starting from ground zero. i was tired and in pain, but it was inevitable. the MO bore the brunt of my frustrations. but of course i kept saying sorry. he was trying very hard with me though. i could see he was really trying. later, i saw the senior pain consultant, in place of my own because he isn’t around. it is ironical because i would think that this senior doctor would know better, but he chose to trigger me, think of me as malingering, and turn me away without any interventions.

the MO gave me hope that perhaps i could get a steroid shot in my shoulders, as it gave me relief for the 3 times i received it last time. but the consultant? he turned me down flat. firstly, because he ‘doesn’t do it’? secondly, because he doesn’t believe it’ll work. i said i requested for it the last time i saw my rheumy, and she had turned me down due to the risks of damage to the tendons. i had 3 of it back to back in the span of 9 months. he saw that in that visit, my rheumy documented that clinically wasn’t in a flare. so he questioned my need for the injection then. seriously? you’re going to dig up the past? i had to tell him how her opinion and mine cannot be reconciled, and how her disagreement with my condition dysregulates and triggers me so much. of course he doesn’t know anything of my background. but he was taken aback when i in my fury told him that i was so angry with her that i had stabbed myself before. he then went on and on about how i should change rheumatologist. he tried to end this part by saying? i should change a rheumy, or get a second opinion, if my rheumy is not doing me good. i didn’t want to quarrel with him. he knows nothing.

he tried to send me home by telling me to take MORE tramadol. instead of max. 300mg/day, i could take 400mg. more Celebrex. instead of 200mg/day, i could take it twice a day. all these against my arguments that for the former, there is a risk for serotonin syndrome, and for the latter, there is a risk for prolonged QT syndrome. he was so quick to want to get me out of the room. but i told him i came to the hospital, my first going to the EMD with RA as my primary complain, for at least pain relief. and then looking at my watch, i said i have wasted 16 hours of my life just trying to chase for some reprieve when it was not going to happen. what he told me? “we are not Gods.” he said they have hundreds of patients, and thus. i said yes i understand, but at least take my pain away for awhile. i was sobbing again. it seemed all too counterintuitive. he then suggested to call my rheumy.

after waiting, they had called my rheumy and my own pain consultant. they agreed to the ultrasound as suggested earlier on Tuesday privately via email with me. if not, we have to resort to an MRI. the hospital did not have ketorolac. so they fumbled to try to get parecoxib to inject me. because? the consultant said that i should try diclofenac intramuscular 50mg, a “small” dose. i said a “small” dose won’t work and that’s why my rheumy and i moved away from it so many years back. after fumbling awhile to get parecoxib (because i got it subcutaneous, when i saw my private anaesthetist), i told them nevermind. it’s too much trouble. just give me diclofenac. and so i went for lunch, obtained the 10 cent vial of diclofenac, and got it injected by the MO.

in my haste for pain relief, i forgot that with deltoid muscles, it can only contain 1ml of medication as it is a small muscle. i had let him inject a grand 3ml of it in that small muscle, nevermind that i’m fat. and so post-injection i suffered for awhile. i had to stay for at least 30 minutes to watch for side effects. because although i had taken it orally, i am after all allergic to NSAIDs and i haven’t had it injected before. i finally walked out of the clinic at about 3pm with an order for an ultrasound for the affected shoulder.


all these, dear all, was my attempt to get my pain in my shoulder addressed and relieved. i had spent 17 hours just to get an injection worth 10 cents. i had to fight so hard just because i am a chronic patient. i was not only chronically ill, i was chronically in pain. nobody wanted to touch me. as far as they are concerned, they wanted nothing to do with me if they could help it. they were pushing me around. if not doctor to doctor, then responsibilities. if they could delay things, they would not hesitate to. things peaked when even the senior consultant wouldn’t do anything for me. and he is on the pain team??? i wonder if he understands chronic patients by now, or that in my situation and background he refuses to. i don’t know. i can be easy to work with, but once my buttons are pushed, i can get difficult. it’s not difficult to figure really. i just need empathy, that’s all. but insinuate to me that i’m malingering, that my pain is not as bad as it seems and that it is not real, etc. then that’s where i get agitated.

people have to understand that RA patients try very hard not to use acute health services. RA patients themselves are very stoic, and they try very hard to cope by themselves, and even with flares they wait for their rheumy to see them. their pain scores aren’t really 0-10 anymore because they are never really accurate. the “stoic” score is always too low, while the “real” score always seems too high. it’s because we’ve lived so long with the pain. it’s not that we don’t express it, but we’ve learnt through years living with it, that expressing it always seems more detrimental to our own coping, and so we cope by taking it all in quietly, that people forget we’re suffering. we don’t like attention on what we are suffering from, and more so, not many can understand (and treat) what we have.

so when we present ourselves to the acute health services like the EMD, it truly takes a lot of courage from us. we grit our teeth and go in, and know that we are damned. but we try anyway because we are at the end of the line, so desperate. the numeric pain score is useful clinically, i can say so as a nurse. but as a RA patient, i hate it with a vengeance. when i am “stoic”, my score is 2 although 10 joints for example, are flaring. because 2 for me is manageable, near my baseline. why? because i am almost never pain-free. but in the eyes of healthcare providers, 2 is nothing. really. 2 just warrants paracetamol. that for 10 flaring joints? it makes no sense am i right? if i tell them the whole truth with my pain, i can easily say 6. but they’ll give me a second look because i don’t look like i’m in pain. i’ll become labelled behind my back. but that’s the truth if you want it! i’ve lived with 10-joints-flare on par with the number of work days of a healthcare professional. so what am i supposed to show? a grimace? tachycardia on the cardiac monitor? breathlessness? it just will not happen!

that’s the thing about pain- chronic pain, chronic illness. i cried for help, i went on my knees, but all i got were rejections. and yes i got a diclofenac injection, but in the words of the senior pain consultant: “i’ll accede to your request, although i do not agree, and i hesitate to, i’ll still accede.” is that condescending?

definitely.

but i’m blessed to be both a patient and a nurse

i am physically and thoroughly tired from my relentless insomnia and the fatigue from RA and fibromyalgia.

since deciding that i’ll be putting down yet another love of my life, my mood hasn’t been to great. on one hand, it’s an emancipation, on the other, it’s grief. how many times do i have to put down the things i love because i have to make choices that i do not have to make if i am not in my situation (of having RA and depression)?

i had only an off day after 7 straight days of shift work, and i chose to go out to the sea to paddle. i paddled 3.5km to paddle away all my stress, but alas it wasn’t enough. i enjoyed myself though,and i tried out a touring board, which i liked a lot.

i crawled back to work today. disheartened. i’m just like that. i admit i desire instant gratification. but i know i need time to discern. told myself to be patient with myself, and to keep praying.

i had a patient today who was terrified of tramadol because it makes her vomit, although she really needed it because she was visibly in pain. she already had 2 IV anti-emetics on board. i had to beg her to take the tramadol, although i told myself i would still respect her decision. i don’t like to bring my own medication background when i talk to my patients, but with her, i needed to. for me, helping and caring for her was to relief her of her pain. so i shared with her my experiences with tramadol, from when i first had to try it when i was 17. with metoclopramide and all, beyond 100mg makes me nauseous. i told her i understood that even the 50mg she should take would make her very nauseous. it took me 2 over years of being nauseated to get used to it, with little anti-emetics to tide me through. then i shared with her that now i also take ondansetron with 150mg of tramadol, that tramadol still affects me till today. but i had to reassure her she had 2 IV anti-emetics of metoclopramide and ondansetron to cover her, and that we nurses will be prudent in making sure she’ll get her anti-emetics in time. i spent more than 30 minutes talking to her before she agreed. and i’m glad she gave in to the tramadol.

for the rest of my shift, she was pain-free and relatively free from nausea. she appeared much happier. ate all her food for the first time in 4 days. she’s a Christian, and because of the complexity and complications of her stay, i told her i’ll keep her in my prayers.

and then i am reminded again today of the difference i can make as a nurse and as a patient. so many times within this 1.5 months in the new hospital, have i shared my experiences to make a difference in my patients, no matter how small. i won’t say i am special. i am just that blessed to be a patient and a nurse at the same time.

this was how i held on. that no matter how sad i was, i could still make a difference to my patients. with my patients, they give me life, as much as i give them life (if they perceive so). they are my Bread and they sustain me. but once i walk away i am nothing. i’m just a person who wants-to-do-everything, and a person who-always-says-yes, and a person who-cannot-say-enough-is-enough, and a person who-wants-to-please-everybody.

it’s tearing me apart. just talking about it on Whatsapp to a friend had me crying on the bus. i grief for long periods. i haven’t gotten over RA. i haven’t gotten over giving up ballet which is one of the loves of my life. and now, nursing… yes it’s my choice this time again. but from all the insight i’ve gained in 5 years, it would be more than foolish of me to continue to fight when i was already wounded to begin with.

i’ve done my best. i’ve tried my best. i’ve given it my all despite everything- all the illnesses and unimaginable admissions and treatments. and God forgive me, that i am not doing Your will. but this sea of sadness is becoming an ocean. i need to overcome it before it drowns me out.

i have so many dreams. i have 5-year, 10-year, 20-year goals. i want to make changes happen so that patients will benefit. i want to make changes so that healthcare in Singapore can improve. i have so many dreams. but oh well. i told my friend, that one day, i’ll be back. once i’m much better.

putting down my calling

a time for discernment.

(please note that as this post is published, no action as been taken yet. still discerning!)

it’s the time for me to finally say, that i am putting nursing down and aside.

it’s been 5 years since near graduation that my life changed, although i really thought my life had changed when i heard and heed God’s calling to be a nurse in 2008. it wasn’t too far apart- merely 2.5 years and it fell apart. each time i came out of the hospital as an inpatient i returned as a nursing student or a staff nurse, only to fall apart. my graduation got delayed. my growth as a staff nurse got delayed. these when everything pointed to my capabilities to being otherwise. i was always doing well, most times pushed to limits others weren’t even, although they were at the same pace at me. i see that at my saving grace, but i also see that as nothing. i couldn’t survive psychologically.

caring for my patients heal me, and it is probably my Bread. but working in an environment with that much tension, i admit, that all that healing runs into negativity. there are too many to ‘please’, too many people to listen to, not good enough for all of them. and i am but only me. i am rather odd when i am nursing my patients. i am stubborn, and very stubborn at that. it can be troubling to my colleagues when i’m new and i do and decide things alone. but i do so with my own knowledge. i trust what i’ve learnt and read extensively- textbooks, journals, peer-reviewed papers etc.  i trust what i’ve experienced and what i’ve learnt not to do when i was younger as a student. but people take offense, and so take offense at me. i can’t change and lower myself to please them in that way, because i don’t want to compromise patient’s care, although i can ask more and be receptive. but it’s been imprinted. done and dusted.

i keep believing that with my recent recovery efforts, it’s enough for my psychiatrist to lift off the major depressive disorder(MDD) diagnosis. but it never seems enough no matter how severe or how minor my symptoms are. i get upset sometimes this year when he says he can’t lift it and i have to make him go through the entire diagnostic criteria to convince me. after so much of medications, ECTs and therapy, i’m still in depression. it’s sad to say with my own insight that perhaps i really am not recovered enough to handle the toxic work environment of a hospital (although i choose to work in a hospital). i want to choose happiness, finally. because of 5 years even though nursing is my lifeline, it’s made me so so so sad. it made me cry so much, and it made me hurt myself (triggered by nursing school).

it really came to light when i’m only 1.5 months into my current job and i’ve already broken down in the ward in front of my Nurse Clinician. there are too much things i cannot reconcile in this workplace and it causes me great tension. and already there are colleagues who are hating on me because i’m not picking up their (bad) practices fast enough, or for whatever immature reason it is. i have enough on my plate (health issues). and i sense that the Ward Managers/Clinician are wanting to push me too, accelerating my progress a little fast. it’s like, i already hate my job, other than my patients who sustain me.

i keep talking with God, asking Him to grant me His grace of His wisdom of what His will is of me. i know He wants me to be a nurse. but things can change, and i want to choose to be happy. 2 years ago when i was spending 6 months in the hospital, my treatment team kept asking me to change careers. they almost begged me not to return to nursing anymore. but i told them with conviction that it is my calling and that i have to follow it. i was never a staunch Catholic, but i would never understand why i would heed God’s calling so faithfully. perhaps this is it. this is my time to switch.

i don’t know where i’ll go, but i know that God has carved a path for me. i will never stop caring, because as a patient, i can never ignore what patients feel. so now, i’m sitting on Counselling, and praying as much as i can, asking for as many friends to pray for and with me as i discern where i should go.

(a little over a year ago i wanted to do Social Work. this year, i suddenly switched my mind to Counselling and i see that firstly as a sign from God. as many of my friends, colleagues and family have told me, i love to talk and i am very eloquent. with the empathy i have built across the years, i am hoping Counselling will have a place for me, if God wills.)