when i can’t, You always can

i’ve been thinking a lot these days, all the while having thought-provoking conversations with people from my community.

it’s been 6 years since i fell into depression, and it’s also been 6 years since i hung up my pointe shoes for good. to say that the last 6 years was difficult, is a sore understatement. i’ve always found it hard to get back on my feet. each time i seem to be grasping recovery in my hands, i fall even harder. my doctors can only conclude that i am severe case who can’t seem to remit or get better.

loss. loss is something i experience a lot, and I have been unable to properly grief each time. i’m still hung up about each and every loss that i’ve experienced, that i almost seem to live in the past. the what ifs, the could’ve beens, the should’ve beens.

the loss of giving up ballet due to RA’s joint involvement, and the inability to even try to go back to class because of my deconditioning from prolonged hospitalisations and the breathlessness from long-drawn anemia… i never got over that. and now even though i could go back to class, the recent mysterious attack on my left leg has rendered my leg almost useless for ballet. it never really ends, does it? this was one of the two passions in my life, and giving it up hurt plenty.

the loss of my sanity in 2010, my fall from “grace”… i never got over all that i’ve lost from that fateful day when i finally called it quits and downed all those pills. i continued losing a lot more because i could never reconcile with myself the fact that i am imperfect, flawed and only human. i continued to battle with myself, against the words of others and the self-deprecating beliefs about myself. and right here right now, i’m still clawing my way up the deep dark hole that i fell in.

i lost my calling. the calling which I was so passionate about. even though i was the one who chose to give up nursing, it still aches so bad. but between getting hurt by the people around me as a nurse, and hurting because i left, it’s easier to choose the latter. nursing is unfortunately my only other passion that gave me some semblance of a meaning and purpose in my life. it’s been a year, and although i moved on to study psychology, i’d return to nursing in a heart beat once my doctor gives me full clearance.

i lost my freedom to be free and active. the fatigue from RA and fibromyalgia can be very debilitating, and it’s something very few people can understand. the fatigue, amotivation and insomnia from depression piled on top of it. and then i gave up trying. long days overwhelm and tire me. physical activities scare the shit out of me. crowds and excessive noise drive me crazy. the hot weather test me each time i step out of the house. if i could i’d curl up at home and watch the telly. and that’s what i’ve been doing. commitments are hard to maintain because i’m not the energetic bunny i used to be. i’m now the lethargic sloth who’s tired everyday and tries all ways and means to stay at home and not practice any self-care.

i lost my ability to be fearless. to be uninhibited. all the what ifs hold me back and hold me captive. tomorrows are never certain. i could be all fine and dandy today, tomorrow i could be a disaster. today i could be walking, tomorrow i could have one limp leg, or joints that are angry. everyday is a surprise. on one hand my life is a monotonous unending cycle. on the other hand it hits me like a hurricane each time i get up, or with each conversation i make. nothing is ever stable. nothing is static. i can’t be fearless. i live in fear, inhibited by the memories of past.

i essentially lost myself. i lost who i used to be in its entirety. how do i get over that? how do i tell myself “i’m sorry you had to lose so much, but look forward and not back. live. your future is in your hands.” it’s something i’d tell someone else, yet not to myself. reconciliation has never been more difficult and under-managed. the Steph that is now, is not the Steph who lived till 20. that Steph died. and me, this Steph that i am, has been damaged, and broken, shattered into smithereens, put together haphazardly with craft glue, scarred, and yet still on the verge of falling apart. so flawed. so imperfect. so damaged. so unloveable.

this is not a pity post. i put it here because i know i would forget this aspect of my insight into myself. i want to reclaim back my life. yet what tugs hard at me is the “NO”, because i’ll fall and get hurt again. how do i ride against the tide and the waves physically? my body feels extremely incapable of doing anything physical without having any adverse effects on my body. and how do i stop looking back, and look forward instead? how do i forgive myself for going savage against myself? how do i forgive the people who took it too far with words?

at the end of the day, no matter what, it is always God whom i should turn to.

“when i can’t, you always can.” -Kari Jobe

mostly better

30 days of the Attack on My Left Leg (ALL) has just passed.

i made a resolve to be walking without my crutch this week, especially when i’m out of the house. i’ve had some near-misses, but after 4 days i am still unscathed. there’s still some numbness in my foot and my medial thigh. but the strength is better than it was. of course it’s still weak and i can’t even try to run for the bus or the lift. but the exercises that i did helped a tad. i have been having nightmares where my left leg has gone totally numb and motionless. i hope that will never happen.

pain-wise, my shoulders are better than when i was in the hospital. if anything, my lower back and my head hurt more than my shoulders. i’ve been able to cope without opioids. my anaesthetist didn’t know what to do with my back pain except to loan the department’s TENS unit to me to tide me over the next 1 month.

my mood on the other hand, did not improve with the increased lithium. sigh.

 

tough month ahead

it’s been 23 days and my leg is not better. let’s just assume it’s never going away, or that it’ll get worse. tampering my expectations.

i got to see my rheumy today. apologised to her about needing to slot in today because of what the rheumatology team did when i was inpatient. but she cleared some things up and also got a picture of the shit i was and still am going through. firstly, MRI results for my shoulders show bursitis and tendinopathy while on etoricoxib 120mg, but DMARDs still not called for because of its chronicity. however she is still going to be discussing my MRI results with the radiologists. secondly, it’s very rare but RA can involve the nerves in the way it did for mine (other than peripheral neuropathy) but it would show up on the nerve conduction studies (which nothing did). thirdly, we don’t know what that odd thing my leg does  when i try to flex it with my foot pointed when i’m lying face down. she has to ask someone else about that too. she’s showed more compassion today, which was helpful because i’m not in the best of my moods today and i was entirely sleepless last night.

hours prior, i saw my psychiatrist. he upped my lithium. it only can mean one thing. doing poorly. it has been some rough 2 or 3 weeks. so the order has been given, he has been pre-empted that the hand tremors will worsen like it always did when we tried it, but there is a chance it’ll help me as it has in the past. how else?

another research methods module to frazzle me further this month. it’s gonna be a tough August, Steph.

 

heart trigger

i guess nobody would truly understand, why i’d shed those tears on that hospital bed. why i curled up under the blankets, why i had undone something that was already mended. why even though it’s not my fault, it actually is my fault.

nor can anybody fathom the pain and anguish that i hold in my heart, for the parts of me that aren’t well. most days the time goes by, minute by minute, hour by hour. my body bears the brunt of my chronic pain, my mind fights off what brings me down. but ever so often the mind and/or the body breaks when it’s fatigued. it feels like it is in a precarious position then- tip it ever so slightly in either way and i’d crumble. if i’m lucky, it is either one. if i am not, it is both.

the idea of permanence of these things that ail me is frightening. i always try to be ok with my afflictions. sure i do whine about pain, pills, doctors and all. but i always try to see the good in these afflictions. i tell myself- and i do have to tell myself to convince myself- that although these afflictions pain me and God, it shapes me into a better person that God wants me to be. i’ve personally witnessed that when he called me to be a nurse. so i trust in Him with that. i often ask why, and i have learnt (though i do forget) that i may never get answers/solutions. i’m never getting cured of RA. i may never live absolutely pain-free. i may never be mentally well enough to be a fully functional adult who can stop going into hospitals. the left ventricle of my heart may continue to dilate. the weakness and numbness in my leg may never go away, it may get worse, spread, or morph into some disease. it can be everything and nothing. and it’s not up to me nor anyone else.

when i get into an acute situation with my health, giving it time usually helps me place my faith and trust back in God. it’s not easy, even though i’d like my faith to be stronger than what i am right now. God meets me where i am, i must remember.


it is literally driving me crazy, but i wish with all my heart that we know what’s going on with my damned leg.

*slit*

it’s Day 17 of the “Attack of the Left Leg” (ALL).

to be entirely honest, i am on a perpetual verge of crying. why so, perhaps only i know deep down inside. but for the overt reasons, it’s not that difficult to figure.

this month hasn’t been good to and for me, and i haven’t got much of a chance to really rest at home until now. it’s a mix bag of sadness, anger, frustration, bitterness, confusion, shame and guilt. and also it’s a mix bag of desiring clarity, joy, peace, normalcy, freedom and love.

before my medical admissions for ALL, there were the psychiatric stuff. i was not proud of them, i was ashamed of them, and i didn’t want to repeat them again. in the eyes of my psychiatry team, i was probably one who was always pushing the limits without a care for consequences. and to them i was probably the one whom they didn’t know how to help. they could only talk, treat me symptomatically, and psychoanalyze. they could not tell when i would break down, do something savage and end up in the hospital again. the one week of drama upsetted my parents, i know. it would be terrible to mistake my actions as one with disregard for consequences. i know what it entails, and to me, the pain in the flesh is never worse than the pain in the heart.

i got distracted by the ALL. it happened 3 months after the first, and it also soon happened after my neurologist ruled out Multiple Sclerosis. i used my first ALL as my baseline. after tests and tests, everything that could be tested came out normal. i got out of hospital on Day 4 of the ALL.  in my first attack, i could ditch my crutch by Day 5, and by Day 10 or so it was completely resolved. this time, i was caught off guard and it did not resolve. Day 16 got me back into the hospital. my request was simple- if neurology can’t figure it, let rheumatology do so. as the days passed, my leg got stronger, but the numbness stayed. my ankle reflex was still absent (a sign of a lower motor neuron lesion).

for rheumatology, they digressed because my shoulders were flaring probably from the stress that my leg was causing. x-rays and MRIs. they found “suggestive” bursitis on both and infraspinatus tendinopathy on the left side. i was floored when they said they wouldn’t intervene until my appointment a month later. apparently it was not evidence enough that there was inflammation because the radiologist used the word suggestive, instead of definitive. they left my anaesthetist to bear the brunt of my pain and titrate what he could to keep me comfortable. i lashed out on the neurologist before i went home, not about them but about rheumatology. i was in tears, because i seemed to be reliving the past which i had no interest in reliving. needing to convince someone about your pain is not easy, and i have fought with my rheumy about this for years on end. i had only declared to her that i’d lay to rest the chronicity of my shoulder pain and simply live with it. that seemed to work fine (it means that it works better than fighting). barely 2 months later and all that “progress” went down the chute. because i appeared “distressed” and “demanding” my rheumy tried to placate me by asking to see me 1 week later. i know what condescension and patronizing is when i meet one. i know i’ll probably leave the consult even angrier than i was. having said that i might not even go just to retain some sanity.

3 other things. they found Methicillin-Resistant Staphylococcus Aureus(MRSA) in my wound, which i have no idea how it happened. and my peripheral blood film showed monocytosis and thrombocytosis. likely nothing, i feel. but they insisted on excluding everything. lastly, the psychiatrist cleared me for having these neurological symptoms as psychosomatic. even with the chronic pain. so the next doctor who brings psychosomatic up to me will really get it from me.

the neurologist gave me an open date for an appointment. i asked him what happens if i get another ALL. come back to the Emergency Room, he says. i question in my mind, what can they do? probably only rehabilitate me. friends around me are telling me that i can always get a second opinion. i`ll leave that till my next ALL.

but above all, on Day 17 my leg is worse than it was on Day 15. i don’t know for how many more days will i be keeping count. i feel extremely helpless, extremely tired, and extremely overwhelmed with emotions. i haven’t really gotten to deal with my emotions the whole month, and i’m not surprised i’m feeling it all now. that’s a problem though. i’m not good at that.

i want this stupid thing about my leg gone. i wish there was a name for what’s up with my leg though. i wish i was in the psychiatric hospital longer than i was back then. i wish rheumatology never got involved. and i wish the neurology team didn’t get to know more than what they needed to know. it’s extremely painful thinking of how things might have been if they were different. but i know it would not be well to dwell on these things.

it’s a surprise everyday with my leg. and as for my heart, it aches as much as my head is tormented. the psychic pain never quells. it takes me plenty to be ok, to smile and to laugh while thinking of everything that has happened and is happening,  but i guess c’est la vie. i foresee maladaptive coping.

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.