an entire life of RA, and it’s my first time going to the emergency department (EMD) because of RA. i’m just 2 weeks shy of my 25th birthday.
my shoulders have been impossible to live with. as if being denied the intra-articlular steroid shots to them weren’t bad enough when i saw my rheumy, they seem to have gotten worse with the reinitiation of methotrexate.
the last few days have been incredibly hard on me too. i’ve been getting a lot of constitutional symptoms like malaise, loss of appetite, and this time also weakness. then due to me beginning cradle nursing my palliative patient, my fingers and back are blowing out too.
because of the unrelenting shoulder flares that best optimised medications cannot even treat, and of course due to the past few days, i had to grit my teeth to come in. i had worked for 9 days straight, and my shoulders cannot take another.
now, the problem is, how do i find my way through the system and come out of it with at least one of my goals met? i was going to find out that the system, including the doctors and nurses, abhorred people like me. it was not said to me, but i felt the countertransference, and i definitely received it in all its raw glory, their utter dislike for having to handle patients like me.
just finished triage. i start to wait to see the medical officer. i was very miserable as it was cold and i was flaring everywhere. i asked for at least 1 heat pack, and they had none. they could only improvise with a glove filled with warm water.
i finally get to see the MO after 2.5 hours. initially, the MO was very respectful and kind. he tried to find ways to help me, but anyhow i told me i was not leaving this place without at least pain relief for my problematic shoulder. but after maxing out most oral analgesia, which is also all possible analgesia for a person, his solution after seeking an opinion from a senior doctor was to give me the balance of what’s left for the day that i hadn’t taken. then he told me he hoped it would work, honestly he doesn’t know what to do if it still doesn’t work. i was given a bed in the observation area.
i had to wait yet another 1.5 hours to get mere tramadol 50mg and oxycodone 5mg- the balance of my daily dose- given to me with the rest of my usual night meds.
the MO came to review me to see how i was doing. after telling him that the pain in my right shoulder and back has increased, he is telling me to just tolerate it till morning rounds, which is some grand 6-8 hours later. and when i asked him why, he said it’s because i’m smiling, and it doesn’t look like i’m in pain.
i flinched at that. it’s a wake up call again that hey, i’m not normal. i’m a nurse myself, and i know it when patients malinger. so of course when i am smiling and say i am in pain, others will think i’m bluffing right? right.
the fact is, and i don’t know how to get this across to the MO, that yes it hurts more in my shoulder and back. but my feet, wrists and fingers are better now. i don’t know why i’m smiling, but perhaps i’m lying in a bed now, as opposed to sitting in a hard chair for 2.5 hours before i saw him earlier? can’t i be more comfortable, yet be in pain too? can’t it be more, yet less at the same time?
i’ve lived a life of pain, and yes it’s oxymoronic and conflicting at times. how things have to be, how things turn out. it’s just like that. pain changes a person. a chronic pain patient could say her pain score is 2, when it’s really 10. she could also say it’s 10, but not show any outward sign; not even in her vital signs. either way, she doesn’t show it. she’s learnt and known for so long not to show it. so what do you want, MO?
what can i do to make you believe that i am for real?
he said he would check on me an hour later again to see how it is. i could sense he didn’t want to have to deal with the persistent pain.
no signs of MO. i chased the nurse for the MO to see me. i had to pester, and then was told that the MO had left and has handed my case over to another MO. by this time, i was relatively pain-free in the rest of my body. it was more focal on my shoulders.
no signs of MO after the ‘promise’ to review me at 0230hrs. so technically, it has been 4.5 hours since the MO reviewed me when i was last in pain. and no one bothered to even check. did someone forget that pain is the 5th VITAL SIGN? i had to threaten that if the MO is not going to review me, a complaint will definitely be served. so he appeared. he had the cheek to ask me what i should tell him to do. i’m not the doctor! i told him off about how he was taking such a laissez faire approach to me, a patient with acute on chronic shoulder pain, that hasn’t been relieved with all oral medications. i said to him that just because i’m a chronic pain patient, he cannot ignore and think i’m “malingering”, just because i don’t show my pain outwardly? he just defended himself by saying he’s a lot of patients to see. you mean you cannot even spare 1 minute to see me? the EMD is not a big place for goodness sake! at this time i was served a dose of Panadeine (paracetamol/codeine) and my usual dose of Myonal (eperisone). he told me, “isn’t this enough?”. so i asked him, in his factual judgement, if this is sufficient for me, looking at my history of pain and the pain medications i’m on. he said factually, HE DOESN’T KNOW. so i told him, “let me tell you factually, IT DOES NOT WORK!!!”. he went on to repeatedly asking me what he can do for me. in the end i suggested an IM jab of an NSAID like ketorolac. he walked off.
i asked the morning shift nurses if i have any medications. they told me with much nonchalence that i had taken my medications. i said no, they aren’t even my usual medications. and the MO said he would order something IM/IV. i wasn’t even getting my usual doses of tramadol, oxycodone, pregabalin etc. they told me they would ask the doctor.
i still am not served anything. i was told that alas i was going to be seen by the pain doctors. BUT!!!! they are doing it differently! they decided to make an appointment for me with the pain senior consultant in the clinic, discharge me, and send me on my way up, that’s a really quick way to absolve themselves of a “troublesome” patient”! i demand to be given my medications, and i so i am given. i think they were more efficient in the last hour because they couldn’t wait. but sigh. yeah my usual morning meds, including 50mg of tramadol. they missed out oxycodone (as usual because it is a controlled drug) and Celebrex.
i spent almost 4 hours in the pain clinic. it’s a clinic that i was familiar with, but today, it suddenly seemed so foreign to me. i was first seen by the MO who has to try to get the whole picture right. usually chronic pain patients have a long history, and although i already have a record with them, my own pain consultant wasn’t around. so it seemed like starting from ground zero. i was tired and in pain, but it was inevitable. the MO bore the brunt of my frustrations. but of course i kept saying sorry. he was trying very hard with me though. i could see he was really trying. later, i saw the senior pain consultant, in place of my own because he isn’t around. it is ironical because i would think that this senior doctor would know better, but he chose to trigger me, think of me as malingering, and turn me away without any interventions.
the MO gave me hope that perhaps i could get a steroid shot in my shoulders, as it gave me relief for the 3 times i received it last time. but the consultant? he turned me down flat. firstly, because he ‘doesn’t do it’? secondly, because he doesn’t believe it’ll work. i said i requested for it the last time i saw my rheumy, and she had turned me down due to the risks of damage to the tendons. i had 3 of it back to back in the span of 9 months. he saw that in that visit, my rheumy documented that clinically wasn’t in a flare. so he questioned my need for the injection then. seriously? you’re going to dig up the past? i had to tell him how her opinion and mine cannot be reconciled, and how her disagreement with my condition dysregulates and triggers me so much. of course he doesn’t know anything of my background. but he was taken aback when i in my fury told him that i was so angry with her that i had stabbed myself before. he then went on and on about how i should change rheumatologist. he tried to end this part by saying? i should change a rheumy, or get a second opinion, if my rheumy is not doing me good. i didn’t want to quarrel with him. he knows nothing.
he tried to send me home by telling me to take MORE tramadol. instead of max. 300mg/day, i could take 400mg. more Celebrex. instead of 200mg/day, i could take it twice a day. all these against my arguments that for the former, there is a risk for serotonin syndrome, and for the latter, there is a risk for prolonged QT syndrome. he was so quick to want to get me out of the room. but i told him i came to the hospital, my first going to the EMD with RA as my primary complain, for at least pain relief. and then looking at my watch, i said i have wasted 16 hours of my life just trying to chase for some reprieve when it was not going to happen. what he told me? “we are not Gods.” he said they have hundreds of patients, and thus. i said yes i understand, but at least take my pain away for awhile. i was sobbing again. it seemed all too counterintuitive. he then suggested to call my rheumy.
after waiting, they had called my rheumy and my own pain consultant. they agreed to the ultrasound as suggested earlier on Tuesday privately via email with me. if not, we have to resort to an MRI. the hospital did not have ketorolac. so they fumbled to try to get parecoxib to inject me. because? the consultant said that i should try diclofenac intramuscular 50mg, a “small” dose. i said a “small” dose won’t work and that’s why my rheumy and i moved away from it so many years back. after fumbling awhile to get parecoxib (because i got it subcutaneous, when i saw my private anaesthetist), i told them nevermind. it’s too much trouble. just give me diclofenac. and so i went for lunch, obtained the 10 cent vial of diclofenac, and got it injected by the MO.
in my haste for pain relief, i forgot that with deltoid muscles, it can only contain 1ml of medication as it is a small muscle. i had let him inject a grand 3ml of it in that small muscle, nevermind that i’m fat. and so post-injection i suffered for awhile. i had to stay for at least 30 minutes to watch for side effects. because although i had taken it orally, i am after all allergic to NSAIDs and i haven’t had it injected before. i finally walked out of the clinic at about 3pm with an order for an ultrasound for the affected shoulder.
all these, dear all, was my attempt to get my pain in my shoulder addressed and relieved. i had spent 17 hours just to get an injection worth 10 cents. i had to fight so hard just because i am a chronic patient. i was not only chronically ill, i was chronically in pain. nobody wanted to touch me. as far as they are concerned, they wanted nothing to do with me if they could help it. they were pushing me around. if not doctor to doctor, then responsibilities. if they could delay things, they would not hesitate to. things peaked when even the senior consultant wouldn’t do anything for me. and he is on the pain team??? i wonder if he understands chronic patients by now, or that in my situation and background he refuses to. i don’t know. i can be easy to work with, but once my buttons are pushed, i can get difficult. it’s not difficult to figure really. i just need empathy, that’s all. but insinuate to me that i’m malingering, that my pain is not as bad as it seems and that it is not real, etc. then that’s where i get agitated.
people have to understand that RA patients try very hard not to use acute health services. RA patients themselves are very stoic, and they try very hard to cope by themselves, and even with flares they wait for their rheumy to see them. their pain scores aren’t really 0-10 anymore because they are never really accurate. the “stoic” score is always too low, while the “real” score always seems too high. it’s because we’ve lived so long with the pain. it’s not that we don’t express it, but we’ve learnt through years living with it, that expressing it always seems more detrimental to our own coping, and so we cope by taking it all in quietly, that people forget we’re suffering. we don’t like attention on what we are suffering from, and more so, not many can understand (and treat) what we have.
so when we present ourselves to the acute health services like the EMD, it truly takes a lot of courage from us. we grit our teeth and go in, and know that we are damned. but we try anyway because we are at the end of the line, so desperate. the numeric pain score is useful clinically, i can say so as a nurse. but as a RA patient, i hate it with a vengeance. when i am “stoic”, my score is 2 although 10 joints for example, are flaring. because 2 for me is manageable, near my baseline. why? because i am almost never pain-free. but in the eyes of healthcare providers, 2 is nothing. really. 2 just warrants paracetamol. that for 10 flaring joints? it makes no sense am i right? if i tell them the whole truth with my pain, i can easily say 6. but they’ll give me a second look because i don’t look like i’m in pain. i’ll become labelled behind my back. but that’s the truth if you want it! i’ve lived with 10-joints-flare on par with the number of work days of a healthcare professional. so what am i supposed to show? a grimace? tachycardia on the cardiac monitor? breathlessness? it just will not happen!
that’s the thing about pain- chronic pain, chronic illness. i cried for help, i went on my knees, but all i got were rejections. and yes i got a diclofenac injection, but in the words of the senior pain consultant: “i’ll accede to your request, although i do not agree, and i hesitate to, i’ll still accede.” is that condescending?