August 27, 2014
i saw my pain specialist again today. everything has been hurting all over again since early last week, although it is not like anything stopped hurting. he was bummed to know i was back on lithium, which meant our hands are tied with NSAIDs except for sulindac. he searched throughout the internet hoping to find some evidence that perhaps i could try some other NSAID. he says sulindac is too weak and does little. i totally agree. we switched gabapentin back to pregabalin. i didn’t like the dosing and side effects of gaba. it has done little for me since i started on it early July any way. and so because without a NSAID in RA and fibromyalgia (more so in the former), he gave me Targin(oxycodone/naloxone) to tide through my flares. finally an opiate that MIGHT release me from pain. but we both know it’s not the panacea.
we explored the piriformis block and the sacroiliac joints injection. he was kind enough to give me a discount if agreed to the piriformis block, but there is a 10% chance of blocking the sciatic nerve. that means paralysis of that leg for several hours. meh. that doesn’t sound nice if can’t take time off work, although i desperately need and want it. we both agreed though that i need the SI joints injection more. but when i finally found out how much it costs, i was aghast. i believe it wasn’t his fees nor the medications that would cost much. the facility fee (because an operating theatre with fluoroscopy would cost more than $1000) itself jolted me and i told myself NO NO NO. i can’t afford that. there is no way. and just like how i couldn’t afford biologics, i might just have to say no to SI joints injection, even though we are pretty sure i have sacroilitis that is causing significant pain.
i had SIX, instead of 4 the last time i did it, trigger point injections today. i had an extra 2 in my lumbar back. but you know, unlike the last time, i’m still in pain, and i’m pretty bummed and upset.
yesterday, i saw Dr S. i challenged him, since people around me, like my family and friends, doctors like him have commented that i’ve gotten better. i asked him if i still met the DSM-V criteria for all my diagnoses, especially major depressive disorder (aka depression), which Dr G felt strongly that i might not even have had it. he said i still do. i was puzzled and i questioned him why i still do. he didn’t say much, except to ask me a rhetorical question if i think i’m no longer depressed. he clarified that i only had traits of 2 personality disorders, and that they weren’t full blown. but my eating disorder, like MDD, remains. i was dismayed. i thought the depression was long gone. really.
my mum had told me earlier this week that since my medical bills have been so high, i could ask to see Dr S say, once a month. I told her i could try, but the decision lies in him. my mum inherently thinks i’m much ‘better’. or so she thinks. so again i challenged Dr S. when can i see you? 2 weeks or 1 month? we bounced back and forth between both choices. i said if i could choose, i’d say 1 month. but i told him. you must have the confidence in me to say that you can see me in 1 month. there is no point in insisting to save my money (i know he was trying to help me too) if something happens in between and then it’s just damage-control. in the end he firmly said 2 weeks.
his fortnight appointments are of course an improvement from last year’s weekly appointments, but it still speaks volumes of my stability. i could be so fucking functional when i work. but the pain, people, words, everything else, just pulls me down so much.
but oh well. c’est la vie.
i begged him to change bromazepam. it’s not working and it’s only giving me 2-3 hours of sleep. i told him to “pull something out of his Doraemon pocket”. we always seem to be running out of options. not only with him, but for me with any other doctor with time. he gave me flurazepam. it worked for 1 night. i hope it continues to work. *crosses fingers*
August 21, 2014
today marks 300 days out in the wild. i can’t believe i’m still counting, and 200 seemed only awhile ago.
i vacillate between celebrating the growing numbers, and crying while time ticks with the numbers increasing. but for now, when i can, whenever i can actually, i shall smile. and…
i can only bloom where i am planted. i don’t belong in hospitals (as a patient).
August 14, 2014
on Tuesday at 6ish first thing in the morning, i heard news over the radio that Robin Williams left this world. my heart sank. i was anxious the whole day. i popped 4 lorazepam pills that day just to quell the anxiety and uneasiness. that night, my psychiatrist upped my bromazepam to 3mg.
in this post, i’m talking about death. taboo i know. my version, not a know-it-all for sure. but i hope it gives perspective in a different light.
disclaimer: i’m not pro-suicide. everything i write here is based on my honest opinion with my (if you would call it) extensive experience on this topic as a patient, but also with a perspective coming from a nurse with empathy.
i’ve never thought that i’d one day be ‘dying’. and you know, in this day and society, you are only allowed to be befitted that term when you have a terminal illness. when it comes to chronic or mental illnesses, everyone turns their backs against you, shaking their heads and wagging their fingers. i was met with that, even though i tried so hard to stay.
i was so far gone, my psychiatrist had to tell my parents “to be prepared for the worst”. i kid you not. it was not that i wasn’t seeking help. i was, and they did everything we could until all was exhausted. there was no ICU. no intubation nor mechanical ventilation. no beeps of the cardiac monitor. no iv lines and drips. but i was watched like a hawk, restrained and sedated sometimes. i spent hundreds of hours in therapy. i cried rivers. i did as many as 41 ECTs (electroshocks to the head, in ‘layman’ terms). i only stopped because my memories were slipping through my fingers like sand. i was still dying. i just wasn’t dying yet with the ECTs. i was prepared not to make it past 2013. and when i did, i wept that i did, because i wish i didn’t have to. i’ve had countless of admissions till some friends would say (deliberate or not) “are you admitted again???”. i’ve had so many stitches done, staples too. i went into surgery twice. i’ve had 3-4 packs of blood transfusion before. my skin has been split, ripped and torn apart at least 1000 times. i’ve had 2nd degree burns. through all of these i’ve seen and heard those faces of disapproval and gossip, hushed whispers with pupils staring at me at the corners of their eyes. if i’m ‘lucky’, i get rained upon directly in my face.
and that’s how the system, the society shames people who struggle with depression. cries for help become objects of ridicule. some people say people with depression don’t seek help. but are people actually aware how many actually do, and still commit suicide? in case you didn’t know, mental health professionals are humans, and they can be cruel too. like all of us. it’s a double whammy because one seeks out the courage to get help, only to hear those shaming or blaming words from people who are well-respected. i’ve had it not only once- i’ve fired more than 2 psychiatrists because of it. they made me worse. and i’ve known people who actually attempt after what their doctors have told them during follow-ups. think about that. the same way you think about it when you see a GP and he/she is sub-par, brushes you off, doesn’t treat you and/or illness properly, and leaves you feeling more lousy than before. same.
people say those who go through with suicide are cowards, selfish. actually quite contrary. i don’t mean you need to be courageous or selfless to take your own life. but look at it this way. the way we humans are, we have self-preservation instincts. to even overcome that is a feat by itself. we live, because we love. why would we leave the people we love behind? i tell you, that is the hardest damn part of it. penning letters, writing cards to say your last goodbyes. just knowing that you get the last say, the last word and the final goodbye… and that there will be no “but”s. the love we have in our heart gets tugged at no matter how we try to harden it. we don’t want to go. we see our loved ones hurt. we quietly hope things might be better again. but we know that time and yet again, things turn out awry despite the best of efforts. and people still put you down for not trying hard enough or for being weak. how do we find that balance? sometimes love isn’t enough when daggers come your way everyday. love isn’t haemostatic in that it needs time.
many times people put me down for what i was, for what i am, because of depression. and like in Robin Williams’ case, it is all but a facade. most people with depression put on a facade. it’s easier that way. but behind that facade, no one really knows. do you? i do.
all my keloid scars- scars i try so fucking hard to hide- are my battle scars. i am never proud of them, but i am trying not to be ashamed of them. when people do know, or when people see them, they make comments. ugly ones. ones with aghast. i just tell them “i have been very sick”. but i wish i could say “IF NOT FOR THESE, I WILL CEASE TO EXIST“.
i last left the hospital almost 300 days ago. my first since 2010. my honest motivation not to get readmitted was my insistence to “let things be”. no more crisis interventions because i didn’t want to be stopped (thus the fear by my team and myself actually that i might not make it past 2013). nothing was working, my team was at their wits’ end. it was basically me. it felt like the whole world, the people around me, my friends, my family, looked upon me as though it was my fault even though i tried so hard. so that was my final straw, my final “fuck you”. i am weak, i am not strong enough, i’m not trying hard enough. fine. so be it.
trying to live a life again after long institutionalisation is difficult. the amnesia. the weaker facade. the increased vulnerability. and then really just trying to be ok. all the while trying to function like a normal being, because there’s no excuse to be anything less. and yes, at the same time trying so fucking hard to stay, and not go on a whim. because the back door is as the back of my head. so readily accessible.
to me, “dying” isn’t about solving problems. it doesn’t, and in fact it creates more. “dying” is about stopping the pain, halting it right in its tracks because you can breathe no more. it’s a bit like being at the edge of a cliff, but someone is pointing a gun at your head. which way would you go? “dying” is not cowardly nor selfish. yes the backlash it creates can be huge, but before the “death” has anyone thought what they might be doing to the “dying” is more cowardly and selfish? “dying” in depression is not inevitable, but some slip through the cracks.
i hate it when people shame those who have died from suicide. it was and will always be in my mind, which is what i believe are congruent with all those who died by their own hand- “i’m damned if i do, i’m damned if i don’t” anyway. people in severe depression think this way, that in this life they are already damned. they know too, that they will be damned if they go. you’d think they don’t? they fucking well do know. but it is in their comfort to know that although daggers still come, they won’t receive them anymore if they go.
in my short life (24 is almost a quarter of a century, but it is still short), i’ve suffered too much pain. family dynamics, chronic illness, mental illnesses, of love, passion and loss, and my inability to reconcile with my personality. i’ve suffered struggling in silence, with JIA which morphed into RA, with bulimia nervosa and depression. now there’s fibromyalgia and a dilated left ventricle. i seek help, i look for doctors. i take my medications. i try to be open about them and talk freely about it. but nobody likes to listen to someone with so much baggage. even my family has switched off. they know since some 300 days ago, they should already be prepared for the worst. my enduring battle was- to go with a word or to go quietly? and i wonder if they still remember. i’m still fighting, still trudging on. i’m still counting, and that’s a consolation at least.
nobody wants to die by suicide, truth be told. it’s never easy, and that is a fucking understatement. and yes it’s murder of the self. but think about it.
who provides a person with the gun in the first place?
August 9, 2014
i finally got a referral letter from my rheumy to a pain specialist on Monday. it was a poorly written letter, i was admittedly ashamed to even give it to the pain specialist i found, whom one of my boss recommened too, Dr C. i call my rheumy’s letter the objective report of my condition. i typed out my own report of my condition, in the ways i felt and experienced it, that my rheumy didn’t/couldn’t write.
Dr C was very empathic. after a very lengthy discussion and examination, he was very sure i have fibromyalgia. he said RA itself is in and by itself difficult to cope with. and now coupled with, fibromyalgia, he told me he simply cannot imagine how i actually cope with it. he said he ‘sees’ how crippled i am by the pain, and in an odd way i was glad someone finally saw that. my pain is real. it’s not in my head.
he suggested and i consented to treatment. he gave me 4 trigger point injections in my upper back- lignocaine with bupivacaine. it wasn’t painful, and the relief was instantaneous. then he gave me intravenously some parecoxib, which had me very wonky after that. the last was a subcutaneous oxycodone. i felt so much better after that, after the side effects of the IV parecoxib wore off. the nagging and unrelenting pain in my back was gone. i could finally breathe.
he suggested injections into my sacroiliac joints, which i’ve wanted since 2009 but was never offered or given by my rheumy. but because that has to be done in the OT due to the need of fluoroscopy, i need to think about that. i forgot to ask him about injecting the piriformis. he also talked about opioids, as a next step. but he had concerns with interactions psychologically and pharmacologically with psychiatry. he optimised my current pain medications of tramadol, gabapentin, and re-added celecoxib. i told him if these still do not help further, opioids will be the next.
i was happy. less pain is always good.
my psychiatrist finally changed my diazepam to bromazepam, after i issued him an ultimatum that i wouldn’t leave the room until he did something about my sleep. it was getting worse. i could now fall asleep, but i’d sleep for 2 hours only, and then i’d stay awake and not sleep anymore. i tried it last night, and oh gosh i did finally sleep properly before work for the first time since returning to work in February.
well today on the way to work, i actually tumbled down about 6 steps (legit!). i got hit badly in several areas and i guess i have large bruised surfaces. my first reaction was “OMG SO EMBARRASSING” and “PAIN PAIN PAIN”. and i chuckled to myself that this fall was counterintuitive to yesterday’s pain treatment.
getting a “divorce” with my rheumy. she can no longer help me, and whatever she does now is just patronising me. people are telling me not to bail out on her, to give her more one more chance. but the truth is, i can’t even count the number of times i’ve given her chances/let her test my patience at the expense of my health, with 2 hands.
July 26, 2014
yesterday at work, i received a call from my rheumy. she had seen my email. i excused myself to speak to her as there wasn’t any patients, so i walked out of my clinic, and hid in a corner while i talked with her.
she saw my OGD results. and what she said wasn’t what i wanted to hear. well, she doesn’t always say things that i want to hear. so… despite normal scope results, she is unwilling to treat my RA aggressively with DMARDs like we’ve done so previously. she finally threw the words at me “you’re clinically in remission” at me, and at that point my eyes swelled with tears. i was insulted. or perhaps, my body was. i rebuked “yes perhaps clinically i am in remission, and i know how it is clinically defined. but as far as i know as a RA patient, i have never been in a remission”. she didn’t say anything to refute that.
she said there was an issue with polypharmacy. she wanted to minimise the number of ‘unnecessary’ drugs, and consequently the side effects, since my RA is “not active”. she also mentioned that she spoke to my psychiatrist that they needed to manage the psychosomatic component of my symptoms. perhaps i heard her wrong, but she was insinuating that it was a lot more in my head than it is in my joints. she reassured me that she believes me when i say that i am in pain. but being terribly disillusioned, i felt patronised.
if she believes me, she wouldn’t be doing this, and i wouldn’t still be silently fighting with her all these years to get into a state worthy of me calling it a remission.
i told her as i sobbed, that she only looks at my inflammatory markers once in 3-4 months. she examines my joints once in 3-4 months. that’s only 1 day out of the possible 90-120 days. how does it quantify my disease activity or my quality of life? i was crying talking to her when my colleague came out to call me in as my patient had come. i think she must have seen my tears. but i told her to give me a while more, and i continued to speak to my rheumy.
in her desperation, or maybe exasperation, she gave me the green light for NSAIDs ONLY. she kept telling me that she understands, that she knows what i’m going through. but she doesn’t. i’ve seen how doctors work from a nurse’s perspective. i’m a patient myself. i know it personally when a healthcare professional tells me he/she understands. she doesn’t. not only does she not understand, she disapproves. she goes on further to say “let’s not give up”, and at that point i was like a grenade ready to explode. it has never been a “let’s” thing. i was always alone and there was never any support. i could never get her when i needed help with flares or side effects. there wasn’t a rheumatology nurse. it was always me trying to fight for better treatment but always coming out of the consultation room disappointed knowing that the coming 3-4 months will be painful. again.
in the conversation there were so many silent pauses, because she didn’t know what to say while i waited to hear how she was going to respond. i ended the call patronising her in turn. wiped my tears, blew my nose, and went back to work like nothing happened. i had to greet my patient with a smile and apologise profusely for making him wait. it wouldn’t be fair to him and professional of me if i brought the aftermath of the conversation back into the clinic.
i cried so much after work and at home. this morning too. i cried because despite me giving endless chances to my rheumy to prove herself to be a good one, she may not be the good one i’d like to have. or the one who is able to help me. i cried because in giving her chances it was a disservice to myself, letting myself flare endlessly and writhe in pain. i cried because this someone who saw me grow through my late adolescence into my adulthood, who i respect and love very much, turned out to be the exact antithesis of doctoring.
maybe she forgot that RA came first. maybe she forgot that the lack of control in my symptoms of RA is feeding into my depression. maybe she forgot too that it is because of the invisible progression of my disease that i gave up one of my life lines which is ballet, and greatly affected the other, which is nursing. those had already rocked the boat, especially with the lack of any support. and maybe she forgot she had let herself be blinded and biased when i fell into severe depression and wasn’t the girl she used to know anymore. i became the girl who was doing things she was disapproving of. and then from then on, the fight changed.
i remember well when i first told her that my hips hurt. she told me the hips are usually not affected in RA, and brushed me off. but the synovitis in my hips was the last straw that made me pull out of my ballet exam and then finally retire from ballet. am i not aware of RA joint involvement? yes the hips are more relevant in OA. but as a patient i told her that and it was dismissed. what was i to do?
i am fully aware that my rheumy was trained in USA and is very in touch with ACR guidelines. i do not question her professionalism. and as a patient who am i to question her knowledge? i empower myself and i am my own advocate. i ask questions and I make suggestions. sometimes she takes them, sometimes not.
but now, it has gone to the point of total irrationality. RA. without DMARDs. only NSAIDs. with a poor history of response even with triple DMARDs plus a NSAID in the past. currently with a new diagnosis of fibromyalgia.
i don’t know what to do.
July 19, 2014
courage, dear heart. – c.s lewis
bear with me if you will, this topic will never go stale for me.
in the recent light of things, i’ve grown particularly sensitive again to the delivery of healthcare in Singapore. it isn’t that i never stopped caring- i never stopped caring. but when you’re put in the frontline of things, when you are put in front of doctors as the patient especially at a time when you need their help the most, it is the time when the culture of healthcare providers rear their horns.
i struggled. i really struggled when i saw my cardiologist. it was a new symotom, although not foreign to me. i knew what breathlessness(dypsnea) is. it was terrible when i was anemic, but it was accompanied my tachycardia. i was rather used to the effort intolerance since 2011. but this year, with good knowledge that my anemia has resolved and then subsequently finding out myself i wasn’t tachycardic when i was breathless… i was scared.
yes. i am not ashamed to say that i am scared. with a somewhat diminished quality of life(QOL) with RA, new fibromyalgia and ongoing battles with mental health issues, it scares me.
when i saw my doctor, she found out why i was breathless. my left ventricle had enlarged/dilated/stretched out. for my LVIDd, it was already past normal limits of 5cm. and if i ever do hit 6cm it would be more or less be pathologic. we roughly knew why. but she was so fixated on how we’re going to prevent it from deteriorating. i am cardiology-trained yes, but when it came to myself, i was helpless.
i had so many questions for her. will my ventricle ever return to normalcy (although the likelihood is almost zero)? can we reduce the distressing dyspnea? the list could go on and on. but our conversation just revolved around me being tachycardic (which i have clarified i haven’t been for at least 6 months), and my medications.
my consultation with her was the last for the day, and it ended so haphazardly for me. the conclusions from that day were long, but weren’t pleasant at all. the end of her consult broke me. my faith in doctors shook hard once again.
this is not doctoring is it? i walked out of the hospital (after visiting the EMD for an IV drip) for the thousandth time- the place in which i was borned and mostly treated medically, the place where i trained as a nurse, the place where i first gained employment- again disillusioned, feeling lost and very doubtful.
what are they doing? or perhaps i should ask myself, what am i doing???
it was hard to cope and i was drowning in the mess of co-morbidities and drug interactions, impending flares and current symptoms that aren’t treated, unanswered questions which remains so after years, financial instability, and a relatively new job that i’m trying to keep.
i didn’t know what to do. i was so upset and distressed. so i got a tattoo. that’s all. and if anything, it lightened my heart a little. i am contemplating withdrawing my services completely as a patient from the hospital, and that thought by itself feels like a reprieve. this is despite knowing i will not get treated for my RA, nor will i see my cardiologist and gastroenterologist. gynaecologist even. this is disillusionment at its best.