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.

detractors

i’m angry.

what makes people think that they capable of judging and deciding if i am strong enough, psychologically or spiritually? and why does this happen again and again? i realised that these people are the ones who know my battles (especially with depression). i don’t care if they are friends, or if they aren’t. one should never use a person’s weakness against her. it’s absolutely degrading and dehumanising. it’s another story though, if the person is my doctor, my therapist, or someone who has journeyed with me for years.

what do you know of me? you know my name. you know i’m a Catholic. you know i’m a nurse. you barely know the names of some of the battles i fight. that’s all. and on that basis you could tell me that i shouldn’t do something? you don’t know me. you don’t know my story. you don’t know my real battles. you don’t know what these scars are- what they all stand for. to you perhaps i am someone who shouldn’t dream, that i should grow roots at where i am, because you think that’s all i’m capable of. i know you and some others think so lowly of me. because i am that damaged.

so here i am listening to my psychiatrist say that i’ve improved by leaps and bounds, and there with people of the same faith i’m told i’m not there yet? don’t bullshit with me. is sanity more important? or faith? one needs both. but you cannot deny the former is definitely more important. without it faith is hard to sustain.

i’m tired of people who try to rain on me when i have rare sunshine. of people who tell me no when i’m just going for my dreams. of people who see me as less because i decidedly choose to be open with my depression.

but really, it speaks volumes of who they are, not what i am. i am not silly to heed their words. it’d be more prudent to heed the words of those who know me for longer and better, those who know my battles and my wounds, those who know how my heart beats and skips. and of course there is the Lord my God.

i can’t believe a night of praise and worship was spoilt just like that.

a 3rd shoulder opinion

entering the consultation room, i saw my anaesthetist pouring over the notes in the system written by my rheumy, the EMD doctors and his colleague who saw me. my shoulder has really got them all puzzled, and now he was my last hope of alleviating my pain. he is after all, a pain specialist. and what my rheumatologist cannot do, he surely can. he looked at my dismally low ESR of only 17, and could not correlate it to the RC tendinitis. so he asked about my neck (second person to ask this), palpated trigger points on my shoulder, and then said something no one guess. his guess? MUSCLE SPASMS. i

it was hard for me to digest that muscle spasms can cause such excruciating pain in my shoulder. but he is a very intelligent doctor and i respect his opinion. since i’m exhausting all options, why not listen to his opinion? he suggested a few trigger point injections along the shoulder to relax the muscle spasms and hopefully ease the pain in the shoulder. i went along with it, and ended up getting 3 of it with bupivacaine. then i unabashedly asked for him to give me a suprascapular nerve block because i wanted to go SUPing for my birthday. he acceded and i had the 4th jab. for all my shots now, he’s not using any steroids. both of us learnt the lesson together last year with my steroid load haha. he spent 30 minutes with me, and i was grateful for that.  the rest of the day my shoulder was aching. i was seriously doubting that he was right. but by the next day all was good. he might be right after all.

it’s been 3 good shoulder days now and i’m still glad it’s doing ok. my left shoulder is bugging me now, but aye one at a time.

it’s taken at least 3 doctors to try to figure out what is up with my shoulder- orthopaedic surgeon, rheumy, anaesthetist- and all of them have very different ideas of what is happening. i don’t know who i should be listening to. i don’t know if muscle spasms causing the pain means my RC tendinitis is not valid? although the ultrasound shows it to be? i don’t know if RA is involved in the process as well. i guess i may never know, nor will they. we just have to bounce back and forth, here and there, until we are sure.

that’s the complexity, but also the beauty of rheumatology. it’s not fun for me, but is definitely challenging for rheumatologists (i know some are in it because they love the challenge). i guess right now the medical doctor i can rely best on is still my anaesthetist. my rheumy can only do so much and offer that some ol’ drugs which i’ve tried almost all that’s in my paying capacity. so…


p.s.

ah. and yes. people do cringe when i say i get poked in my back, into my spine, into my joints, at my nerves etc. and rather often at that too. nurses when assisting my doctors for my injections, get cautious in case i scream or faint (patients do fall over, believe me). i secretly think they’re more afraid than i am, that i have to reassure them that i’m ok. my rheumy and anaesthetist who have poked me enough also have to tell the nurses to back off a bit because they know i’m gonna be ok. dealing with painful chronic illnesses inevitably ends up with these injections as a treatment option. compared to the pain i go through everyday, all these momentary pain is nothing in comparison. really. i’m so good with needles that nothing gets to me anymore. one just has to be. if not, how else? it’s just one way to cope. that’s life.

25

image

i’m struggling with my 25th. birthday’s aren’t special anymore (like i’ve said for the past few years). they are a stark reminder of my morbidity and mortality. they make me question my life and my suffering, and for how long more till it everything ends. i seek for the real Steph. the Steph i lost 5 years ago after falling into depression. year after year however, i am more convinced that Steph is gone for good. that the Steph that i am now is the one i have to settle with. and that it will also deteriorate.

in one year i’ve learnt so much about myself and about people. it can be heartening, but more so it makes me disillusioned. i exist with the pure aim of preserving my life. i try to build upon that a life of love and giving, of hope and wanting, and of course growth .

putting back the pieces hasn’t been easy; it’s a sore understatement to say so actually. i’ve tried to learn to accept myself for what i am, and not identify myself for the illnesses i have. i experienced acceptance and rejection in that. more for the latter, rare for the former. i see the kindness and empathy of people, but also the cruelty of reality. i want to see mankind beyond their darker side; there are people who are saving graces, but the rest destroy that ideal of mine. and so you see that as time passes i grow more bitter and disillusioned.

i’ve had to deal with radical changes in my body. weight gain. fibromyalgia. more pain. more medications. i do what i can to cope, but i find myself being unable to. the basis of my suffering with RA first has not been grieved for properly, and simply having to deal with concurrent illnesses and being slapped with new ones, i cannot take it all in. in short i am struggling still, after so many years. i am battered and bruised, i try to be ok with it outwardly, but the dissonance is terrible. in the past year i’ve been more open about the crosses i bear, yet i am clammed up about my pain. i’ve begin to realise that putting up a facade of being well, especially at work, cannot sustain. it is cruel to the self.

recovery for me has a steep curve. from having to hurt myself to none at all. from relying on others (the doctors and hospitals) to save me i’ve begun to save myself. the notion that things can actually get better, that after the rain comes a rainbow, is still  very foreign to me. i dare not be hopeful because things always turn out otherwise. but i’m still learning to do that and yet still be hopeful. how do i do that, i don’t know. i’ve learnt to be gentle to myself. to be loving of myself, of what others cannot give to me. i am now said to be better than i ever was since 2010. but there are still dark clouds lurking, threatening to give thunderstorms and lightning. i am always wary that recovery can be lost to almost anything. it’s in such a precarious state. i never stop wondering how i can hold recovery in my hands, yet not drop it while the rest of my body and mind rebels.

again the aim is self-preservation, and no one can hold  my recovery in their hands. it’s mine to hold and my responsibility to bear.

i have been so blessed however, to be a child of God, a bride of my Lord. experiencing renewal in my faith, and returning to God. i have received so abundantly and so freely, i am loved in spite of my sins and transgressions. what i can say, is that in the last one year, returning to God was the most joyful. because of Him i could live a bit better and love even more. He sustains and heals, and i cannot ask for more.

i’ve been told a many time that i am an inspiration to others, for the things i do although i struggle with my circumstances. i’ve also been told that i am a great nurse. i deny them because i feel i am not worthy and deserving. but i am learning to be accepting of what i am, and the difference i make to others.

i am 25. i’ve lived a quarter of a century. i am shaped constantly by this life i live. and while i hate celebrating birthdays, i must because i am still here. nobody knows if i will get to live till my next birthday. i don’t know what the next one year will hold for me. the possibilities of regression and deterioration are real. however the hope of a better life and healing is always there.

i want to live more and love more. to give selflessly, and not ask. to keep choosing happiness and say no to what brings me down. i want to serve my Lord, and do His will.

Happy Birthday Steph. Stay hungry always.

lived and loved

i guess now that it is unofficially over, like really over, i feel all kinds of emotions. i didn’t think a source of such great joy could become so painful, physically and mentally.

i guess i could say that since i’ve gotten squarish piece of paper, i’ve held my breath so hard till my face has turned so blue- my future was balancing so precariously. i fought so hard i almost lost my mind; through tears and anger, with gentle acceptance and then disillusionment that hardens a heart… it’s a kind of liberation i never thought i’d feel. the deadweight i’ve been carrying, this squarish piece of paper called our nursing license… i will put it down and not want to have to touch it again. until I know for sure that this precious thing can be featherlight once more…  i can breathe again i guess. no more heart stops.

and i guess it’s a sigh of relief for me. it’s been such a prolonged torture of since i’ve been down in 2010, of mostly rock-bottoms and a few short-lived highs that those who love me have been asking me to leave nursing. all i’ve ever said is that it’s my calling, and i’ll not do anything else. it’s a push come to shove thing. it has put my life into perspective for me. the last 5 years of nursing (the last of nursing school and then being a registered nurse), a whooping 2.5 years were spent inpatient. it speaks volumes of how sad and sick i am/was. and continuing it will not make it any better. in fact this job i’ve just left, had me in the hospital suddenly after 500+ days out, just because an incident was poorly handled. people can say whatever they want of me.

but for my dear friends who know how much i’ve gone through, how much i’ve fought through these years, and how much i love nursing. i’ve done everything in my best capacity as nurse. i loved as much as i could, to my patients, and i hoped that with it came healing. i hope it is enough for now. i daren’t even ask that it should be more than enough. how can i? with it all the expectations i have for myself, the ones i thought others had of me, can burn now. everything i hold myself up to- all the knowledge that i needed to know plus CNEs and EBNs… all these have been so burdensome, that even my fiery passion cannot make it any lighter. i can put it all down now.

yet it pains me greatly. that i am choosing not to serve my Lord out of my selfish want of happiness. that i am not doing what God had created me to do best, that is purely for the cause of my patients. and it is just because workplace colleagues and supervisors are always pricks, and workflows and SOPs are always so messed up. that these added up together just undermines a person’s values, morale and dignity. for years i’ve trudged forward knowing that i am serving my Lord right from when i heard my calling. putting this down is not so much a difficulty for myself personally, as it is for me spiritually.

(i’ve decided that should i ever work part-time while i am studying, damned i’m throwing the license out of the window. it gives me a higher pay no doubt, but the weight on my shoulders isn’t worth it. nuh-uh.)

i’ve lived and i’ve loved. what more can i ask for?

wrought still, with questions

there is only so much that one can be helpless, and from then on… i can only say i can only pretend and play along.

i saw my rheumy today, and everything that i had begged for in her, i suddenly received when i was in the consultation room. was i surprised? yes of course! today was going to make or break it. does it change my situation? well, no. her empathy is a welcomed relief from her past invalidations of my pain, but my pain is still here to stay. i’m still count my blessings though, because her empathy means she is listening, and from that she is able to adjust my treatment to what we can BOTH agree on.

i say that this is pretty helpless, because now hearing from an orthopaedic and rheumatologic point of view, we still don’t know why i have rotator cuff tendinitis????

  • is it caused by RA?: unlikely, says rheumy. tendons rarely get affected in RA, but when they do the disease would have first damaged the joint first if anything. also, it seems like if even the shoulder is affected, it would be even further in disease that it can reach the RC tendons. (looking at RA disease progression, and how my rheumy explained it, if anything the tendons in the hand will first be affected, not the shoulder!)
  • is it mechanic then?: like, says rheumy. but we don’t know because we have no MRI and she wants to hold it off till i at least fail physiotherapy.
  • so nothing’s sure yet?: hasn’t it always been?
  • medications?: we are exchanging celecoxib(Celebrex) for etorixcoxib(Arcoxia) since she thinks it might work. i’m giving her the benefit of doubt, but generally not believing it. one NSAID for another?
  • anything else?: she recommended PT of course, then also accupuncture. she wasn’t listening about the “can’t do PT while still in pain” thingy so i really don’t know. aargh.
  • can you be managed by an orthopaedic surgeon?: i did ask her, and said that if she thinks it really isn’t a RA thing i will let ortho handle it. but she said she’ll still be seeing me nevertheless for my RA, and managing my flares and all. so she’ll do her best with the pain. she however held back with the ortho referral, saying that it is not warranted until a MRI is needed. (my guess is such imaging is left for the ortho doctors to figure out, nevermind the report.)

i told her about the triamcinolone shot i’ve had, and she does agree that by now it should’ve kicked in. i cannot be injected again until 2-3 months later. and i’ve confirmed that if the tendinitis is indeed chronic/mechanic, and not a flare of RA, then my ESR especially will not be elevated.

i remarked with a sigh that it’s gonna be a ‘wait-and-see’ game, and she disagreed because she says there’s PT! yay!. why of course! when you’ve not lived a life chasing for something like being pain-free, or for the next rheumy appointment because your flares won’t go away, or when you start a new medication and it takes 2-3 months to kick and till then you’re ‘dying’. you cannot appreciate what it feels like to keep waiting for plain normalcy. my appointment with the PT is in 3 weeks? is that too long? yes it is. honestly. what will i do with my pain till then? and can i actually do PT with pain? sigh,

i managed to ask my rheumy for prednisolone to manage huge flares during in-between appointments. SCORE. i haven’t taken pred for years, and although i hate what it did to me on long-term basis, i recognise its value in managing flares. i know i go crazy when i have major flares. it affects my mood and it’s a rather vicious cycle to be in.

i had my bloods done today. i am praying that my transaminases are normal. my liver is important to me as much as MTX is. i haven’t felt MTX kicked in yet, so praying that my liver can hold out for as long as possible. it’s like i wanna have my cake and eat it too. abit of bargaining and abit of being greedy here. that’s just part of me wanting to cope from the reality that transaminitis is very possible, but that i’m willing to risk it because at least there’s some chance of some halting of the disease. (the other was SSZ but we were trying to reduce pill burden.)

i walked out of the room today still looking for answers, albeit a little lesser after seeing her. some of the same questions still linger. my fears are still there, and seeing that my left shoulder is also problematic (i’ve made sure it is known to the doctors), it is a matter of time before i have to face the same issue with it as well.

whatever has happened, i still thank God for providing. things could have turned out otherwise and everything pointed to that, but it didn’t. i was taught that in anything and everything, i have to remember that i am living in God’s time. so yes, i am waiting. it may feel forever, but that’s because i’m counting in the world’s time. living in God’s time, i have to be patient and lean on God and trust that in His time and will, He will provide and heal. i have to learn.

trail mix

battling constant nausea despite hardcore ondansetron, i had to cut off tramadol. vomited a number of times over the course of about 3-4 days.

fibromyalgia flaring, and i’ve been having occipital pain with some referring pain. it then dawned upon me it might be occipital neuralgia. who knows? i pray not. but the occiput hurts so much i am seriously considering shaving the back, below where the occiput is. just an undercut so i cut at least rub in some ointment. doing it now with my long hair is just so messy and nothing gets to the skin.

currently trying to ward off a trail mix bag of symptoms like dizziness, frontal headaches, temporal headaches, tension headaches, retrorbital pain, neck pain, and the above 2 symptoms etc.

can you imagine the horror when i had to cut off the tramadol? i am deathly afraid, of all things, nausea. my first suspect was definitely tramadol, because i’ve been loading my body too much with it as of late due to the increase in pain. i have not however, increased the dose to 400mg since my EMD visit. that is one risk i refuse to take no matter how much pain i am in. initially when the nausea was intractable, i stopped taking everything because it was such a nightmare. but now i’m back to taking everything, but still being very careful. no tramadol, despite the additional symptoms that seem to concentrate in the skull.

oh gosh. can i wake up from this nightmare now.

seeing my rheumy tomorrow. i hope there will not be triggers. *fingers crossed*

saw my psychiatrist. 2 weeks of medical leave again. no going back to work, he says! and i concur.