Mistaken priorities

day 15 today, and i am due for home. on day 14, i knew i i am neurogically cleared. but what i thought was missing- rheumatological intervention was missing. i had the impression they would at least start a DMARD or something.

after all, they found sub-acromial and sub-deltoid bursitis bilaterally. on the left they also found supraspinatus tendinopathy. all these are caused by inflammation right? right. 

when i asked the junior doctor of the (lousy) rheumatologist what they were going to do before go home, she said these:

“your ultrasound of your shoulders back in 2011 shows the same as what the MRIs show now.”

“anyway your pain is being managed by the pain team. i even heard that they lent you a TENS unit!”

“you have to wait for that whole month to see your rheumy. she can titrate your medicines. you are are so lucky. some patients wait even longer than that to see their rheumatologists.” (it’s only near for me because when i was discharged last week, they requested that i see them earlier.)

i was furious. firstly, i did not ask for shoulder MRIs. if i knew they would be nonchalant about it, i would have said no. secondly, i requested for their participation in my care to find out if the weakness and numbness of my leg is caused by some thing rheumatological. they completely digressed from why they were involved in the first place.

when the doctor left, i was left on the verge of tears. it felt like history was repeating itself again. i had pain. it could not be seen nor felt. my pain thus cannot be believed. i was stuffed with painkillers. but my joints still hurt from the inflammation. my joints are fucking flaring still! and so with each rheumy visit i beg for something to be done, but perhaps i was only truly helped 20% of the time. i don’t think i was ever truly believed to be in pain, to be honest. the word “psychosomatic” was commonly used, especially after i fell into depression. and if one would think of it, if my shoulder inflammation was managed well enough 5 years ago, it wouldn’t still be as such, and so chronic as well, resistant even to Arcoxia.

my shoulders started to hurt permanently since June 2015. they were the source of me maxing ‘out painkillers with my anaesthetist. we tried intra-articular steroid injections, which did not help, but only increased my steroid load. 10 months later, i made the tough choice of saying that I’ll give up trying to quell the the shoulder pains. both my anaesthetist and rheumy are agreeable to it. i had to accept that my baseline of pain wasn’t 3-5 over 10. i had to reset that to ZERO. like nothing is going on. it felt only right to do so, because being in pain and being fixated on it Everyday is exhausting.

and so the equilibrium that i had found after years and years of pain and anguish, is now thrown off again. because why? they don’t want to treat me despite hard evidence and elevated inflammatory markers. to them it seemed like it could wait. but there is only so much that analgesia can do when inflammation exists.

i don’t know if my anger is justified, but i have had enough bullshit figuring ways to quell all the inflammation, by rheumatologists who think my pain is all in the head, who think that symptomatic treatment is not a priority, and that i could just be managed by the pain team.

i have made it known that i do not want to ask for opioids. and that if my RA is  treated, then perhaps i don’t even need to take that much painkillers.

Attack on the Left Leg

i am entering Day 10 of this “Attack on the Left Leg” (ALL, haha).

i haven’t written since i was medically discharged almost a week ago. to be honest, i wished i didn’t say yes to discharge. i thought the ALL was much better, even though i still needed the crutch.

the first time it happened in March, the ALL was brushed off as a spinal issue. it took me 4 days hobbling around with my crutch, then ditching it and risking it for the next 3-7 days. only then did the ALL disappear completely,

to recap, the ALL has me waking up from sleep like my left leg has fallen into a coma. after some moving and scrambling about to get to Emergency, it got a bit clearer what the symptoms were and where it was affecting. it was mostly numbness, weakness, and parasthesia(pins and needles). the first attack, it went no higher than my left knee. this time, it went up half my thigh.

when i was admitted for my 2nd ALL, i was admitted under neurology. very quickly MRI brain and cervical spine was done. then later MRI lumbar spine was done. they decided to do an electromyogram, a nerve conduction study, and a somatosensory evoked potential, all on my leg. the most dreaded word i kept hearing in the 4 days in hospital- “it’s normal”.

i was frustrated. something was wrong yet no tests were showing anything. without a diagnosis i cannot be treated. i felt like i was reliving a 17 year nightmare going undiagnosed with JIA. i just wanted the symptoms to go away. i want a name to it.

going home on Day 4, i was pretty sure i couldn’t ditch my walking aids anytime soon. by Day 7 i had fallen twice at home because i refused to use my cane at home.

on the night of Day 8, i was almost in tears. the symptoms weren’t going away. the sole of my foot was still numb. my thigh was numb and it was worsening. i felt it was stupid to go back to the Emergency. but i asked plenty of my friends, and they supported my decision. i was doubtful and afraid that i would be rejected and sent home if I did go on Day 9. 

i went, and i asked if i could be seen by rheumatology instead of neurology, since the latter can’t find anything. they agreed. took bloods, reminded them to take inflammatory markers but also said my haemoglobin of 8.8 would skew my ESR. they took it anyway. when i was being clerked by the general medicine resident, he went tendon-tapping again (their favourite test lah). when he checked my left ankle, and tapped my Achilles’ tendon, there was no reflex. he looked so puzzled. tried many times to no avail. i had to tell him and reassure him it had happened in the first 4 days too. 

i was discharged after my doctor made sure my ankle reflex was back. it was back indeed! so why it is gone again remains a mystery.

my inflammatory markers are also elevated. i wouldn’t care really, if i was sick and the numbers are high. but apparently i am very well, RA in remission. how could my ESR be 84 and CRP 31? i have naggy feeling about this, and the offhand suggestion on my prior discharge to have steroids.

i am tired. i hate fighting something i don’t know about, and neither do anybody else. some of the doctors say it may take months to go away, but i won’t settle. make it go away. find out what’s wrong, give me a diagnosis, treat it. 

oh and when my records say that my RA is controlled and in remission, you don’t get to say it to my fac when i can’t do certain manoeuvres. i only agreed upon the quiescence of my RA because there was no point fighting the chronic rotator cuff tendinitis anymore after trying so hard. so yes it’s in control, but my pain score is 3. you don’t get to doubt that.

i told my best friend that i suspect it is peripheral neuropathy. if not it is neuritis, which i am not entirely convinced by. maybe it should be treated by the rheumatologists. maybe plain pred would do the trick. anyhow, this inpatient stays have been flaring up my joints. managed to get the pain team to titrate my doses.

Day 10, and it’s no better. waiting for the neurologist rounds later in the morning. i hope i don’t become murderous because of nonsense muttered. 

the unknown

it’s been 3 days in the hospital, and all i keep hearing is “it’s normal”.

but no, it’s not normal. it isn’t normal to wake up with a left leg numb up to the mid-thigh, experiencing weakness and parasthesia at the same time. it’s not normal this is the 2nd time it has happened in 3 months. and it’s not  normal for it to happen to the right leg twice in public, which saw me sprawled on the ground, and then also missing my bus stop. these 2, just because my right leg took a 15 minute nap.

it is not acceptable to me that it is all “normal”

the numbing/weakening of my lower limbs cannot be explained. the neurology team has done all they can- MRI Brain and Spine, Electromyogram, Nerve Conduction Study, Somatosensory Evoked Potential- all turned out normal. bloods too.

i must be mad to think that i want something to be abnormal. but i’m not.

i’d rather contend with a diagnosis (from an abnormality from any of the tests), than go around not knowing what is going on. the  uncertainty and fear that comes with it makes me anxious. and even though my left leg is the one that has “flared up” and has seen me needing to use my crutch, my right leg has very briefly done so too.

what happens if it occurs again? what if one day, both my legs are numb?  what if the numbness takes longer than usual to return to normalcy? there are so many ‘what-ifs’ without a diagnosis and treatment.
i’m not crazy. i have chronic illnesses. i know what it feels like to not get answers, to be absolutely helpless, to settle despite the distress, and to live on with ambiguity and doubts. it reminds me of my 17 year journey to be diagnosed with JIA and then RA. it was 17 years of pain that i suffered. it was during a decade in this period that i have been accused of malingering and lying, exaggeration and have been brushed off by doctors. and the strangest part of this arduous journey was that what i went through was blatantly a form of arthritis.

so i have to admit that i am scared. i don’t want it to happen again, ever. but that is stating the impossible. i want to know how to fight it and prevent it. i don’t want to be taking Neurobion (supplement for the brain) and hoping it’ll help, because it won’t.

i might have been stressed up by this entire event, or even the whole of the past week. my chronically inflamed shoulders flared up. the neurology doctors were reluctant to add the amount of analgesia that was in the plan with my anaesthetist. as if i wasn’t already worrying about my leg, the pain in my shoulders and lumbar back added on to the burden. i was so desperate i had to email my anaesthetist near midnight so that the pain team can step in to help. they came, they legitimately listened to me, and changed the regime to help my pain management. and because of the flares, they brought rheumatology in as well. i was seen by another rheumatologist, and he was that “if i don’t see it, it’s not there” kind of rheumatologist. it made me angrier. because my rheumy who has seen me for almost 10 years would know how to handle my flares.

can you see what’s going on that’s makes me angry? it’s difficult to understand where i come from. but it’s better to fight a war in broad daylight, then grope around in the dark, not knowing what’s going on and when i will be tripped over.

this i can say, is a huge trigger for me. it’s as if i don’t already have a plate full of illnesses. i am sad, angry, frustrated and bitter altogether.

can you really blame me for that?

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

what’s up

  1. hit rock bottom (in maladaptive coping methods). emailed shrink. he said i should be admitted inpatient to keep me safe.
  2. did not go to the psychiatric hospital directly.
  3. went savage on the body. bleeding couldn’t be stopped after 2 hours. wound up in the Emergency and waited 11 hours for a bed.
  4. surgery to fix the damage i’d done. lungs didn’t take in as much air as they’d hope post-surgery. spent hours with nasal prongs.
  5. medical hospital’s psychiatrists decreed to send me to the psychiatric hospital (oh when do they not?), so i was shipped off.
  6. admitted in the looney bin involuntarily.
  7. struggled in the ward (it’s a madhouse in there), but got out in 4.5 days.
  8. was so happy to be out i shopped, dined and drank.
  9. then guess what?
  10. i screwed up again.

i don’t know why it happened. i mean, it’s fine by me if i screw up but am able to fix it myself. but no. it went awry. i could never fathom the consequences that resulted from my actions. let’s just say that with one decision (and action) i made, i spent at least 5 hours trying to stop it from making my room look like bloodshed, and i from fainting.  5 hours and i am still feeling unwell, my room a warzone. but at least the toilet is fairly ok.

i’m seeing my psychiatrist in a few hours. i think it is not unwise to say that i will be put back in to suffer again. although there is a chance i might get away scot-free, really.

i am such a disaster.

26

i thought i would dread this birthday just as i have in the past few years. but this year proved to be a little different. i think.

many things have changed in the course of the year- from my 25th birthday to the 26th. i’ve gone savage on myself after a year of relative stabilisation. it saw me free-fall from what seemed to be improvement, to nothing at all. it saw me deciding to leave nursing. it saw me venturing into uncharted waters of psychology. it saw me entering a stint in the social service sector. it saw me going into hospital. i was burnt, cut up, bleeding, infected, unconscious. it saw me being stitched up, patched up, fixed, and convulsed. it saw me fighting to stay, surrendering against my conscious desires to go,  so that i could be saved. it saw me stand up again and again, despite the torment and anguish that haunted me. it saw me cry in desperate despair, in hopelessness and helplessness. it saw me being judged as “too far gone”, as “too difficult to manage”. but i guess like all other times, being broken was being human. i may have been shattered into smithereens, but i can still be put back together.

perhaps i’ve listened too many times, to the Les Miserables soundtrack. what always stands out to me is a part of a verse in the Epilogue:

“even the darkest night will end
and the sun will rise”

it is indeed very simple, but it’s taken me a long time to come to appreciate it. with each dawn is a new beginning. it wipes the slate clean. what was last night’s, is past. i spent more than half the nights of the year wishing i wouldn’t see the light of day again. but no matter the state of mind when i fall asleep, dawn comes unfailingly. i’ve come to accept that with God, i can hope even when hope is gone, that He will give me the strength to carry on. faith, hope, love and joy triumphs. and although there will be more despair than all of that, i can try again at each sunrise, and with it can carry on.

it’s rather simplistic, but it is precisely that that this is important. i’ve been pushing it so far i couldn’t see what’s right in front of me.

i will keep trying. and i will be gentle to myself. i know that i will still fall. i know that it’ll be a tough ride. i know that i still have a long way to go. but i will hope in the Lord and in each dawn.

Happy Birthday Steph. stay hungry always.