Tag Archive | hospital

this is the way, walk in it

in 72 hours, i presented myself twice (and no less) to the Emergency Department, afraid of bscklash, wallowing in shame and guilt. how did things become this way?

in June, and even now in July, i struggle. i can tell you that having faith itself and claiming to have head knowledge are a world of a difference. i know that in my utter brokenness, my faith is lacking. i don’t claim as much as i can, my identity as the beloved child and daughter of God. i always remember from retreats and from conversations with friends, about how Peter walked on water. i have to learn from him, in that he trained his eyes on Jesus- he had faith and he believed! because when his eyes wandered he sank!

i have to constantly keep my gaze on God, my saviour! i may not always know why i am triggered or upset, but i guess i just have to put my faith and trust in Him? and yes, i have to learn to open the door of my heart to Him!!!

“He destined us in love to be his sons through Jesus Christ, according to the purpose of his will, to the praise of his glorious grace which he freely bestowed on us in the Beloved. In him we have redemption through his blood, the forgiveness of our trespasses, according to the riches of his grace which he lavished upon us.”

-Ephesians 1:5-8

p.s. Haemoglobin has dropped to 8.5g/dL, but they said it wasn’t low enough for a blood transfusion. Hand surgeons said Palmaris Longus and Flexor Carpi Radialis Sheath both sustained cuts (ie damage) but they weren’t gonna repair it. On a backslab now.

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

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?

pneumonia 

i stayed for 7 days and have undergone the currents 3 times, so that i could be discharged the next day.

but it wasn’t meant to be. on the night after ECT #2, i felt unwell bodily. many parts of me were aching, and so my parents had to leave early to let me rest. after ECT #3 i felt out of sorts again. but this time apart from the body aches, chills and rigor set in. i had a temperature of 38.8 degree celcius.

i hadn’t had a fever in some 10 years so it felt pretty new to me. the medical officer who came to review me did a thorough check, and made the call to send me to my family hospital’s Emergency Room. although i felt it was uncalled for, I followed suit nevertheless.

my white cell count was raised (16.6), and my chest x-ray showed infiltrates in my right upper lobe. my temperature went up as high as 39.2. i have pneumonia, they said.

bah humbug. how did i even get this? i got better to get out of one hospital, only to go into another one. sigh. 

they told me it’s one week of IV piperacillin/tazobactam. it’s easy when there’s air-conditioning and teevee. but what about no?

playing with fire

i played with fire, and i got burnt bad.

i played with fire, and almost danced in it, because i was very sad. what happened as described in my last post was the culmination of everything bad that has been happening for the last 1.5 months. i have been coping in every imaginable way that is healthy. but alas, one can only take so much when one has just started recovery.

i found myself in the EMD almost 10 hours after i got hurt. in that span of time i was in denial that anything should be wrong with me. i even went SUP-ing! but when things got worse, and when i had asked the advice of friends who are a doctor, ex-EMD nurse/ ex-nursing lecturer, and a staff nurse, they told me to go seek medical attention.

i played with fire and i got burnt. i turns out that i have a 3rd degree, full thickness burn with a total body surface area of 2%. i was admitted into the burns unit.

instead of the usual single surgery, i ended up having mine staged. i had my first today, where they excised the necrotic burnt skin that was non-viable. they then put a vacuum-assisted closure dressing on it to promote granulation and to make sure it’s totally clean. i was seen by a psychiatrist, the chronic pain team and the infectious disease team for antibiotic use. i was seen by the physiotherapist. tomorrow i’ll be seeing the acute pain team.

my next surgery is 2 days later to do a skin graft over it.

my white cell counts were already elevated early on. i hope i won’t get an infection again this time. i’m hoping IV Augmentin and IV ciprofloxacin covers most of the organisms i am specifically susceptible to.

i played with fire and i got burnt, and i am paying dearly for it now. if i were given a chance to relive it again, i’d never play or dance in the fire.

it’s silly to think i’m almost invincible, that nothing can faze me. but this time, i can only say this has by far been the most serious. i just don’t know my limits.