Tag Archive | chronic

what you don’t know

  1. RA and fibromyalgia changes a person. living with chronic pain does that to you. it makes me embittered and disillusioned with life and the healthcare system.
  2. Chronic pain means that i carry a pouch of medications in my bag always. Painkillers that go up the spectrum in its strength. Topical painkillers. Anti-emetics in case the painkillers make me nauseated. Anxiety also means i carry with me benzodiazepines (usually clonazepam). Without this pouch when i’m out, i’m practically nothing.
  3. RA is an autoimmune disorder, and it can only be managed (put nicely, put in remission), never cured. And there was nothing i did to induce such a chronic and debilitating disease. Mine started when i was merely 1 years old.
  4. Fibromyalgia is a legitimate illness. It is not a diagnosis placed on a person if a doctor can’t figure out what a patient is going through (i.e. garbage diagnosis). No my pain is not psychosomatic. No my pain is not because i’m doing everything wrongly (posture, ergonomics at school/work, the way i sleep etc), No i’m not lazy, i’m just perpetually exhausted/fatigued despite the amount of sleep/naps i get.
  5. I don’t find excuses because of my illnesses. I try my best even through the pain and the exhaustion. Heck it even takes courage to admit that i am giving something up, or if i have to say no, when i feel my disease involvement is really being tested and exacerbated.
  6. i have chronic depression, and it happened (and still persists) not because i was weak. it started in 2010 because i gave too much of a damn about something- something that i was passionate about, and was good at, that pride took over. at that point my eating disorder was in full swing for a year already, and it didn’t help with the stress and pressure i faced.
  7. i fight. and i don’t stop fighting. i fought to finishing nursing school, and fought to finish it well. i fought at and for work as a nurse. i gave up my career as a nurse because undue pressure and sanctions were placed on me just to validate my license. it triggered me everytime i had to go down to board’s office to submit the letter from my psychiatrist.
  8. the people who are in the caring profession are the very people who perpetuate the stigma of mental illnesses. this was something i could never understand.
  9. i’ve lived in hospitals- medical and psychiatric- for a total of nearly 3 years. it takes courage to go in, to admit that i need help. it is not attention-seeking behaviour. and to be honest, all these time in hospitals are the ones that kept me alive.
  10. and yes, as much as it seems the opposite, i am fighting to live. i subjected myself to 63 sessions of electroconvulsive therapy (ECT- in layman terms, electric currents that runs through the head), because i struggle with chronic suicidality. if i seem forgetful, this is why. amnesia is the primary side effect of ECTs.
  11. i’ve been labelled as the “worst case” my psychiatrist has seen, “the most difficult patient” my psychiatrist has had. 70 over sessions with my psychologist yielded almost no effect on my mental health. so pardon me if i think i am a hopeless case.
  12. people have asked it, and implore you not to ask it nor even think about it, why i am “still like that”. do you actually think any sane person (yes i am very much sane) would want any of this bullshit? if i can have it my way, i want nothing of this.
  13. i am always fighting to manage my conditions, and that includes working towards recovery. sometimes i am able to muster the strength to stay relatively well (usually from extrinsic motivations). but it doesn’t mean that i’ve done it before, that it cann be replicated. circumstances are always different. and not reaching recovery doesn’t mean i am weak. it means i’m still fighting. whether it is me managing my symptoms because that seems to be more important at that time, or whether it is me fighting my demons because it feels like i’m well enough to work towards recovery.
  14. i am always seeing doctors, and again this is not attention-seeking. i see a rheumatologist, a pain specialist, a psychiatrist and a psychotherapist (who’s also a psychiatrist), with the occasional visit to a gastroenterologist, a nephrologist, a neurologist etc. i am for the record, not the healthiest person around, and no i did nothing to deserve anything that warrants these visits.

  15. when i cancel on you, it does not mean i’m not keeping my end of my promise. it usually means i’m exhausted through and through, either from the disease process of RA, fibro, or even depression. or it means my mood has plunged, and/or i am crippled with anxiety that i can’t leave the house.
  16. when you see me smiling and laughing, talking (sometimes loudly), walking with normal strides with my head held up, 99% of the time it is a facade you see. this facade is quite true to my old self. and it takes immense energy to keep the facade up.
  17. when you see me turn a little quieter, becoming more reserved and isolated, head down, and walking a little slower, it means the energy that’s keeping up my facade has run out. it means you are seeing a more genuine side of me, and honestly, i’m not fun to be with once this occurs. it can dampen the spirits of everyone, and i don’t mean to do that.
  18. i am easily triggered. when i see images or hear about things like suicide, means to kill oneself (like ropes, pills etc), and all, i immediately withdraw. it can mean that self-harm will come later, but that’s just the way i am. i am extremely sensitive.
  19. when i bare my arms to you, it means i trust you enough not to judge me. i am not proud of my scars. but i don’t want to tie it so much to shame as well.
  20. it’ll be difficult to accept me because of the way i butcher myself. but i always hope people can understand that self-harm is my way of coping, of self-regulating. it’s just like how people turn to alcohol, drugs and ciggs. and if you have questions, i really don’t mind being asked, as long as it is done tastefully.

it’s difficult for people, and even my doctors, to see how pain is inevitably intertwined with depression. everyday is a battle for me. i start off my day downing anti-depressants and a cocktail of pain medications. it’s a judgement call to make, for how much pain medications i need to start my day. a painful day makes for a very moody and/or angsty day. on the other hand, there is no happy pill. when i’m anxious, i pop a clonazepam, but it doesn’t make it go away totally. sadness, despair, distress and worry usually accompany anxiety. and if i can, i lie down, hide under a blanket, an try to sleep it off. if i’m out, i try with all my might to get home to do precisely that- hide and sleep. the worst is when my mind decides that my life is not worth living. there is no anti-suicidality pill. there is only self-injury and ECTs. i don’t hurt myself for the sake of it. ironically i hurt myself to stave off the suicidality (at least when i’m not inpatient), and it does help. it’s difficult to believe it, but it really does help. it helps me to at least live till tomorrow. and sometimes that’s all that is important right?

everyday is still a day of self-discovery, of learning who i am and what i am. everyday is a chance to be stronger, more resilient, more accepting, and a chance to desire living instead of dying.

my friend from my community described me as a fighter, as do many others, in different ways and words. i constantly deny them, because depression tells me everything otherwise. but for the past few days, i’ve thought about it. if i hadn’t fought, even as a child with undiagnosed juvenile RA, would i be here? if i hadn’t fought through the pain even as it progressed into adulthood, and then also fighting with fibro, would i be here? if i hadn’t fought with depression and bulimia, would i even still exist? it answers it all.

lastly, without my faith in God, i am nothing. He was the one who carried me through all these years, giving me the strength and courage when there was none to go on. He carried my crosses (which are my burdens and struggles) with me, and never left me even when i turned the other cheek. what can i say? God is good. God is Love!!!

The Lord will fight for you, and you have only to be still. -Exodus 14:14

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17 hours for a 10 cent jab

image

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.

2000hrs
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.

2230hrs
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.

0000hrs
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.

0130hrs
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.

0400hrs
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.

0600hrs
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.

0730hrs
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.

1030hrs
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.

1100-1445hrs
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?

definitely.

RA as i know it

I read a blog entry here, and it resonated with me immediately. I felt like I could put my two cents worth here, since a lot of things in my life has changed, RA included.

RA is like that- unless you start doing something about it, nothing is going to change. The pain is just there haunting you and creeping insidiously into your joints. And it takes a lot of courage to give in and admit that we need help.

But the thing is, even when you actually give in and seek help, it doesn’t mean that things WILL get better. In fact that is not a promise that treatment can give you. Because nothing is ever certain. You’ll have good days and bad- sometimes you progress, sometimes you regress. Medications which will work, and some that don’t. Tests that will work in your advantage, and tests that won’t. And it is in us, if we are going to cope with it eventually, or not. Nevertheless, we are already winners in our own rights, and we deserve a pat on the back, or a hug maybe, for even trying. 🙂

It takes time, it takes patience. It takes tenacity, it takes resilience. It takes strength and courage, and it takes some acceptance on our part to trudge on. We all need encouragement sometimes, and we just have to cling onto the fragile hope that things will get better one day. Because it will, as long as we do not give up.

Looking back, this is my 5th year since I was first diagnosed, and probably the 20th year since I started to experience pain from undiagnosed juvenile RA. Sometimes I wonder how I got through all those days- those days when I was writhing in pain, those days when I could barely afford the medications, those days when I was non-compliant, those days when the side effects had a larger impact on me than RA itself, those days when my liver threatened to fail on me, those days when the stigma of being chronically ill stood in my way, and those days when I was totally defeated, physically, mentally and emotionally.

It hasn’t been easy of course, being so alone coping with my RA. I don’t know if I was coping though, because retrospectively, I guess it was just a case with a “DEAL WITH IT!” mindset. I didn’t know what I should do, other than being a good patient, going for my follow-ups, getting blood tests done as requested, and being compliant to my medications. Anything other than that, I was completely clueless, did not have the foggiest idea, and I couldn’t talk about it to anyone. It was just a ‘grit-and-bear’ stance that I had to take just to keep going, albeit very reluctantly.

After falling into depression, it started to become apparent how RA contributed to its onset. And although it wasn’t a direct precursor to my depression, it was all built up along those 4 years of pretending to cope. What a joke it is, really. Seemingly coping, yet not quite there, completely unbeknown to me till things fell apart.

I’ve never been in a remission. I’ve tried most DMARDs, NSAIDs and analgesics without much success. I’ve had multiple episodes of elevated liver enzymes. I’ve gone for periods without any RA medications. I kept on dancing ballet even through my flares. I taught children’s ballet to pay my medical bills. I’ve had days when I was dying of RA pain, yet having to go to school/work. I’ve tried going on long-term prednisolone which made me gain weight, indirectly bringing about my disordered eating, and an irrational fear of certain drugs.

I’ve had my parents tell me I’m a waste of money when I tried biologics, calling me lazy because I can’t get out of bed, and berating me for taking so many medications because it is ‘bad’. I’ve had teachers telling me that I’m finding excuses, and lamenting about my lateness (not knowing that I had to limp the whole way to school early in the morning). I’ve experienced stigmatisation just because I had a chronic illness, and having to proof myself so that I could rise above it.

I’m not even done yet. I’m still in pain today, despite the triple-DMARD therapy, and strictly taking Arcoxia and Anarex. Secretly hoping to go on biologics so that I can go into a remission, yet crossing my fingers that I will never need it because it is so darn expensive.

It’s all of these in the past 5 years that I’ve had to grit and bear, take in my stride, and accept. That I am not what I thought I would be, even though I am still very young with decades left to go. That although I am a young adult, very independent, and feeling like I can take on just about everything, I have my days when I have to just take a step back and know what I cannot do.

Chronic pain messes and affects the state of our minds. It creates chaos and stirs up a storm when there is none. It dims the glimmer of hope that once shone so bright. It steals and robs you of the joy and happiness you once had.  And with all of these, it all seems hopeless, unrelenting and endless. Giving up and wanting out would seem appropriate then, and it is understandable. I’ve had those days when I just want to give up too.

But it is the knowing that giving up wouldn’t serve me well (been there, done that, regretted it many a time), that I trudge on and keep trying, along with the hope which I stubbornly cling on to.

I’ve learnt along the way, not necessarily from RA, that managing expectations helps a lot. Especially when a remission is far from sight, or when the going gets very tough. I don’t expect a remission, and I guess I’ll be fine without it. My good days are now days when I can get out of bed, even though there is pain and stiffness in several joints. I figured that it would be more realistic and achievable, and I should be kinder to myself. My bad days are now those days when I moan and groan (or wince) after opening my eyes after a night’s rest, and wishing that somehow the medications will ease them. I won’t even begin to talk about incredulous/impossible days, which I think we all know and hate with a vengeance.

Sometimes, we and our rheumys forget that there is more to RA than the physical symptoms. There is so much more we can do, emotionally and mentally, to help us along the way to better cope with RA and the changes in our lives it entails. It really is about perspective most of the time, and it would be empowering if we have both the perspective and insight to handle it.

In the end, all we want is to be ok. We may never be what we used to be, but we will be ok as long as we try and keep trying. It is a journey of self-discovery that only we can experience. And we all come out of this stronger. Don’t we?

We are all a better, stronger and wiser person today, than what we were yesterday.

(Oh golly gosh. What a long and incoherent post this is. I hope I made some sense.)