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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.

dear heart

July 19, 2014

courage dear heart
c
ourage, 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.

adventures of a scope

July 17, 2014

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i finally got an oestrogastroduodenoscopy (OGD) done by my kind senior consultant gastroenterologist Dr D. it was my second time doing it, but it was oh-so-different this round.

even though my barium meal follow through was normal with the first gastroenterologist, Dr D wanted to be thorough and see for himself if anything was wrong. he wanted to biopsy for helicobactor pylori too. so i agreed. the plan with my rheumy to stop my DMARDs and NSAIDs isn’t something i like so i wanted to get clearance.

i knew i’d be sedated with midazalom (Dormicum) and will be given some fentanyl. but when Dr D came in, he said that i’m going to be sedated, but i’m probably going to be awake to some extent. hmm… ok… so in went fentanyl 100mcg, which was nothing. then Dormicum 1mg. i felt something, but i was still wide awake. “push another 1.5mg” said Dr D. i felt it too, but still, my mind fought against. i chuckled as i was gagged with the mouthpiece in my mouth. “push 1mg” he said, still nothing. and finally, “push the last 1.5mg” because 5mg of Dormicum is the maximum dose. alas, i was still wide awake.

they proceeded with the scope anyway, while i was wide awake. boy was it uncomfortable, with the scope shove down your throat into your stomach. i wanted to gag, but they had numbed my throat with lignocaine. as the scope went down, i wanted to retch but all that came out was air.  heard them saying “there’s a polyp!”. i saw him doing 2 biopsies. one for H. pylori, the other for the polyp. the usual 10 minutes stretched to 30 minutes. it was painful, to say the least.

i was so awake that when they pushed me out, i nagged at Dr D to cover me with leave from work. it was rather hilarious.

i was put in the recovery area. the protocol was that post-OGD, patients had to rest for at least an hour. but about 30 minutes later, i told them i was ready to go. the staff nurse there asked if anyone’s here with me. of course not! so she asked me why not. i explained to her that i didn’t need one, that i knew the after effects, and that i’m a staff nurse myself.

she went “you’re a staff nurse yet you didn’t want to bring someone?”

i refuted by saying “i’m a staff nurse that’s why i don’t want to bring someone!”

it was all in all quite a funny event. so now i await the biopsy result for my polyp. i am urease negative, which makes me H.pylori negative.

Dr D has given the green light for DMARDs and NSAIDs. i hope rheumy will allow me to back on them. however, he said NO to tramadol, gabapentin and now escitalopram. sigh. what do i do.

the problem of gastroparesis is still here. the cause is still not established. it’s still not being treated. dangling in mid-air again.

SIGH.

*heave*

July 10, 2014

i went back to work today after 2 days of rest, but i am still gobsmacked by what has happened.

i groaned and moaned as i worked. synovial swellings, musculoskeletal pain, an odd tummy, heaving with every effort exerted. i had emailed my gastroenterologist. he has instructed me to stay away from tramadol. and that leaves me with only paracetamol as an analgesia. i am still getting the green light from him if i could even take paracetamol+codeine. i have a feeling that gabapentin will be a ‘no-go’ as well.  and right now i am trying to contact my psychiatrist to see if i can actually continue my psychiatric medications.

my left hip is flaring so badly now, i have a compelling urge to take a 50ml syringe with an 18 gauge needle to stab and stab at it repetitively until it stops screaming.

but honest to God, i feel like crying. i can’t really let it out. it just won’t. nobody i know actually understands how distressing this is. i don’t like to lose control. i don’t like to be in pain. i don’t like to know that this is all a result of a malfunctioning body. i don’t like the fact that although this current state is permanent, it reminds me that this will be lifelong. i don’t like knowing that i haven’t actually done anything to deserve any of these.

i just want someone to understand how difficult this is, while trying to lead a normal life. and give me a nice warm hug and tell me that everything’s going to be ok.

sigh.

 

what do i do?

July 10, 2014

who would have thought a day of 3 specialist appointments would have ended so terribly.

i saw a gastroenterologist with my barium meal results. with possibly delayed gastric-emptying or gastroparesis, i would need a OGD with possibly a biopsy to rule out anything structural/mechanical that the barium meal cannot reveal. if the scope cannot explain it, then i would have to do a gastric-emptying scintillography.

i then saw my rheumy. my bloods are all fine and dandy. my Hb level is at record high- 13.2! my anemia has been definitely resolved, but because we did not do an iron panel, so we do not know my ferritin levels. she says i am in a ‘remission-like’ state because of the lack of active inflammation and a pathetic ESR of 14. but i told her straight that i could differentiate a clinician’s and a patient’s point of view of what a remission is like. i told her a lot about my musculoskeletal pain, the ones in my back that trouble me so much i finally bought a TENS unit. i told her my pain management is very poor, that the combination i take doesn’t work much for me- 3 types of medications in all. tramadol+sulindac+Panadeine(paracetamol with codeine) or Anarex(paracetamol with orphenadrine). i also told her that i have been taking sulfasalazine but not methotrexate due to my upper GI issues.

her verdict? i might have a chronic pain syndrome, most probably fibromyalgia on top of RA. at the same time, she wants me to stop my DMARDs and NSAIDs until i get clearance from my gastroenterologist. she gave me gabapentin and eperisone(Myonal), plus tramadol to tide me over while the upper GI investigations are ongoing. i do not have a good feeling about this because of the flares.

the last i saw was my cardiologist. i made an earlier appointment with her because i was symptomatic. my effort tolerance and exertional dyspnea was worsening. i found it odd despite my anemia resolving (no, resolved!)- i was symptomatic when i was anemic of course. my basal heart rate used to be 90 odd into 100 bpm. now, it’s down to about 70 bpm. so i monitored my heart rate whenever i got breathless, and i realised to my aghast, i didn’t turn tachycardic when i was breathless! that was confirmed when i did a treadmill test at my workplace. it was congruent with my suspicions. we did an echocardiogram. when my lovely cardiologist compared my new results to my last one which was only done about 1.5 years back, i think she was rather taken aback. because when she called me into the room, she wasn’t her usual self. she was fixated at my echo results and the difference it revealed. neither of us expected it. she told me that my left ventricle is dilated, and she couldn’t explain why. she knew i had co-morbids, so she asked me for my list of medications i’m currently taking. she also asked whether i was taking any cardiotoxic drugs. i wouldn’t know! she spoke to my rheumy, they agreed on stopping the drugs, but it wasn’t made clear to me what needs to be stopped. she said that i NEED to do another echocardiogram in 6 months to monitor the progression or status of my left ventricle. probably because the numbers are nearing limits of dilated cardiomyopathy.

her verdict? stop all drugs in an effort to prevent any aggravation of my dilated left ventricle, because no one really knows what causes it. i didn’t have time to discuss things with her. so do i stop ALL drugs? i mean my rheumy already stopped my DMARDs and NSAIDs, but is giving me gabapentin, eperisone and tramadol. what about my psychiatric medications?

pardon me, but all these were way too much for me to handle in one day. it’s like, everything turned upside down in just one day. what’s going on? what am i going to do? what will i do if my body goes flare crazy? what will i do if my dyspnea gets worse? what if i cannot hold myself together as i try to cope with these changes?

WHAT DO I DO??? WHAT WILL I DO???

i’m pretty much a mental wreck right now. i hate losing control. and this is exactly what it is right now.

:'(

when family hurts

July 4, 2014

i got really hurt today.

this topic has been talked about for the umpteenth time, maybe even more. my parents, perhaps more like my dad, just cannot get it.

he said today that it was not their job as parents to understand me (or us as their children). it was apparent that it was in his defense that he still doesn’t understand me. i told him that people who are not family, like J and Dr S, have spoken to them before. he denied it. i refuted it by saying that it happened, but the sessions all ended with me in tears. i have spoken to him about it before too, and even declared that i have shut the door. no entry, not anymore. he continued to argue, and said that i’ve changed.

i told him that the society changes people. he says the society changes everyone. i agreed, but suddenly my mind turned aggressive. are you telling me that society changes everyone, yet i am one who is not strong enough, too weak, not good enough, to withstand it??? i told him that he was echoing what the original perpetrator told me that triggered my fall into depression. when i started tearing, he got pissed at me.

i told him this is the reason why i have always insisted to my treatment team that family therapy will not work, and that although they are adamant, they agree because they can see the family dynamics to be as such.

i refused to speak to him for the rest of the day. i hung up his call. i told my mum to tell him to reflect on what he said. i do this not because i am throwing a tantrum. he sometimes regresses into a child-like state and throws hissy fits and tantrums, and he never realises what is wrong. at my own my detriment i have tried everything to get him to understand what’s going on, but nothing ever worked. even when i cried and begged. so yes it hurts me to hurt him.

but…

i am struggling as much as he does, and he probably never knows how hard it is to fight for yourself and your own life and be met with disdain, disgust and everything nasty at the same time. oh and cope with chronic conditions too.

Happy Birthday Poppy!

June 28, 2014

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Poppy giving me a kiss as i take this selfie

 

Happy 4th Birthday Poppy baby!!!

I bought her a doggy birthday cake to celebrate her birthday, even though we’ve never bought such goodies even for Clover, who’s turning 11 this year. I felt bad for actually conveniently “forgetting” Poppy’s birthday last year that i promised her i would buy her a cake this year. Sat with her on my lap, with a lit candle singing the birthday song. We blew out the candle, and we let her and Clover devour a quarter of the cake each.

Poppy’s my best friend. Although i hate my birthdays, i was happy to spend Poppy’s 4th birthday with us. We got her right after i fell into depression in 2010. My parents acceded to my request even though we already had Clover, because they too, thought Poppy would help with my recovery. And she did. Not totally, but she did, nevertheless. Yes she makes us angry and annoyed, but she brings us so much joy and love.

Happy Birthday my lovely baby Poppy. I’m sorry i had to be away from you so many times when i was in hospital. You loved me anyway. I love you very much too. I know that we are your everything, so know in your doggy mind, that we all love you so very very much.

<3

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