Tag Archive | rheumy

the struggle

what a tragedy it is, that in recovery i am still struggling to live. a state of being deemed normal to others is a state of being too strange and uncomfortable. i seemed to have forgotten what it means to truly live. these 2.5 months have been good yet too surreal for me. everything seems strangely quiet. it’s so quiet it’s deafening in my head. i can’t sit easy. i struggle with the peace. why are things so calm? but despite all i try to celebrate my cut-free days. but it seems that i’m still very early in recovery attempt. he tells me that i can’t celebrate. not just yet. i’ve had better days- 7 months straight. and my psychiatrist can’t forget how hard i fell right after that. (he also couldn’t rule out the possibility that i may fall into depression yet again.) so in the meantime, i just have to hold on tight. normal is good. strange but good. and i would just have to settle with that, and learn that it will be ok.


everytime i see my rheumatologist or anaesthetist, i tell myself “this is it!”. i tell myself that this will be the consult that will make things all better again.  TEN years down the road, and it cannot be more untrue. there is no cure, no fix for all these chronic pain stemming from RA and fibromyalgia. nothing can truly make them go away. to wish that my doctors, however good they are, can make them go away, is unrealistic. and i am only being too hard on myself for asking to be rid of all the pain.

i begged my anaesthetist to take away all my fibro pain (at the least; my rheumy can take care of my joints). going through all my symptoms and then the list of medications he’s been giving me, there really wasn’t much he could give me. he kept all the medications the same, except that he increased the topiramate now to 50mg BD to help with the tension headaches. he was quite appalled by my usage of ergotamine, but i told him this was the state of my headaches. i decided not to get any trigger point injections or intra-articular injections because it’s been proven to be quite futile over the past few years. and i’ve told him i’ll be continuing with physiotherapy, but will be stopping acupuncture. i walked out of the consultation room heavy-hearted. as usual, nothing could be done. i am going to have to live with the debilitating back pain by myself. it doesn’t help that RA is flaring bit by bit each day, and Arcoxia is not helping much.

without considering the 17 years i was undiagnosed, it’s been 10 years. with each day i’m growing more and more weary fighting the pain. and people wonder why i am tired??? i don’t know what i would give to make it all go away. but that would be bliss!

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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

triamcinolone in my shoulder!

saw my rheumy today. i haven’t had much flares since i last saw her a little over a month ago. the shoulders, though have never failed to persist in hurting. it’s presumably the same ol’ tendinitis and tenosynovitis.

both inflammatory markers were very slightly elevated. ESR was 28, and CRP was 25. there didn’t seem to be a reason for them to be elevated. i haven’t had any infections lately, nor active flares. so rheumy and i talked about getting an intra-articular steroid shot into the subacromial space, since it’s the only thing troubling me. i remember deciding with her and my anaesthetist that i should stay away from the intra-articular steroid injections because i’ve accumulated a very high steroid load last year, leading to a lot of weight gain without having much benefits with my pain management.

but since i haven’t had any since the end of last year, we decided to give it another shot. we chose the left shoulder to jab because it has a smaller range of motion. i’m letting it rest today, then tomorrow onwards i have to go back to doing my strengthening and ROM exercises. right now, post-injection, it’s flaring up a bit. not unusual. it’s always happened with any joint injections.

seeing my anaesthetist 2 days later. if my left shoulder gets better in these 2 days, i may ask him to jab my right shoulder. we’ll see how.

right now though, my RA is pretty quiescent. not complaining. in fact, i’m actually very grateful to God for this. i’ve seen worse flare days. so it’s quite a respite. but i’m having more physical problems with fibromyalgia and headache, and i’m taking a shit load of painkillers everyday. am aware that i need to invest in a good TENS unit. but i’ll wait till i see my anaesthetist.

tough month ahead

it’s been 23 days and my leg is not better. let’s just assume it’s never going away, or that it’ll get worse. tampering my expectations.

i got to see my rheumy today. apologised to her about needing to slot in today because of what the rheumatology team did when i was inpatient. but she cleared some things up and also got a picture of the shit i was and still am going through. firstly, MRI results for my shoulders show bursitis and tendinopathy while on etoricoxib 120mg, but DMARDs still not called for because of its chronicity. however she is still going to be discussing my MRI results with the radiologists. secondly, it’s very rare but RA can involve the nerves in the way it did for mine (other than peripheral neuropathy) but it would show up on the nerve conduction studies (which nothing did). thirdly, we don’t know what that odd thing my leg does  when i try to flex it with my foot pointed when i’m lying face down. she has to ask someone else about that too. she’s showed more compassion today, which was helpful because i’m not in the best of my moods today and i was entirely sleepless last night.

hours prior, i saw my psychiatrist. he upped my lithium. it only can mean one thing. doing poorly. it has been some rough 2 or 3 weeks. so the order has been given, he has been pre-empted that the hand tremors will worsen like it always did when we tried it, but there is a chance it’ll help me as it has in the past. how else?

another research methods module to frazzle me further this month. it’s gonna be a tough August, Steph.

 

let go, let God

sometimes i don’t know if it’s letting go, or giving up. it’s a fine line.

for many years, i’ve fought against everything that ailed me. it was mostly pain, then it was the sinking sadness, the murderous suicidality, the ravaging hunger, everything. i didn’t want them. i want so much to make them go away. i wanted real solutions. but everything i have fought for gave me only temporary reprieve. they were still there, and it only made me angry. mostly angry at myself, but also angry at the doctors. why couldn’t i get better? why couldn’t they fix me? i never had the answers, and they didn’t give it to me as well. for years i left consultation rooms both angry and disappointed. the anger raged within me and it fed into the monsters in my head. the hopelessness and helplessness only served to dump me down. it didn’t make things any better.

i must’ve have gone through this phase several times in these last 10 years. my mind shuts down. i stop fighting. i give in. i let it all eat me up. it means that i am settling. i settle with the pain and i will stop asking my doctors to fix me (both my anaesthetist and rheumy). i settle with what i have right now with pain and disease management. i settle with knowing that i will not have answers nor solutions. does it help with the pain? no it doesn’t. but the anger within me quelled. it was like *phew*. the load on my shoulders got significantly lighter. i can breathe better. letting go after trying so hard to gain control over every aspect of my life, was a world of a difference.


i talked to my anaesthetist. i told him that right now i could settle with plain Anarex (paracetamol+orphenadrine), tramadol, and Arcoxia (etoricoxib). that i didn’t need any Oxycontin because i am ok where i am right now. he was cool with it, after some hoohah over opiates between the medical and psychiatric hospitals. he understands that if i do need it, i will reach out to him. but right now, i don’t wanna be popping unnecessary pain meds that will not help with chronic rotator cuff tendinitis.

i talked to my rheumy today. she was very concerned by the possibility of me having MS, and went on a tendon-tapping frenzy today. but besides that, we have established that i am now RA quiescent- i’m in remission. nevermind the rotator cuff tendinitis that’s long-standing now. i told her also that i will settle. it’s a compromise. i don’t want to medicate myself further just to eradicate the tendinitis, because it’ll probably be futile.

(i’ve never really connected with the clinic staff even though i’ve been seeing my rheumy for 8-9 years. but today, an assistant nurse tells me that she knows i’ve been around for a long time. i didn’t think anyone would notice, but well, they did. made me smile!)

i am, to be honest, extremely heartened that these 2 doctors are playing very much of a supportive role. they ask my opinions on what they can do for me, or on what they can give me to help me. it took awhile for us to reach this point, but i don’t blame them. it’s difficult to see for themselves a patient who butchers herself in unimaginable ways, who is plagued with medical and psychiatric admissions, and has so many things on her plate that everything health-wise is intertwined. both of them are parents themselves, and i witnessed their difficulty accepting a patient like me. parents’ instincts i guess. their letting go, and now me letting go, has made it supremely easy to cope.


i’m not quite sure though, if i could settle with the psychic pain. the anguish and the torment of living with depression, self-harm, bulimia and borderline traits, is like free-falling through an infinite drop. you think the horror of falling is ending, like somehow there’s ground somewhere. but it doesn’t end. it will not end until i’ve suffered enough. i’ve let go in a way that i’ve tried to not grasp everything in my head- that’s cruel to myself. i’ve let go in a way that i don’t fight aggressively with my monsters. i’ve settled on knowing that my psychiatrist will not have answers for me- none of them ever had, so what makes my current one different? they know that i am notoriously difficult to treat, my severe depression refractory. i accept that they can’t quite save me. i accept that they are treating me symptomatically and keeping me functional. damage control. we were, and are never in that stage where we look forward and say that “hey let’s work towards recovery”, because i’m not there yet. i’ve never been. everytime i get closer to that, i fall. and so we’ve learnt.


it takes courage and faith, to let go of what i cannot control in my “sufferings”. i’d like to think that i am not giving up. rather, i place myself in the hands of God. i accept how things are. and i work with what i have. i will not chase for answers or solutions if there’s likely none. i will not fight, not because i am weak. but because fighting is counterintuitive. i will cope with these “sufferings” with faith, hope and time. and perhaps one day i’ll be able to say that i’ve triumphed over these “sufferings”. i have doubts with what i am doing right now (everything i’ve mentioned in this post). but this is the only way to go, where i am. and i’ll place it all at the foot of the cross, and give it up to Him.

 

I’m quite sure they’re trying to kill me

a part of me died again, when i heard for myself those words from my anaesthetist. i suspect that one day they’ll be the death of me.

my chronic pain is an unrelenting issue. i wished something, or anything will take it away. in managing my pain my anaesthetist recognises that stress exacerbates my pain, and thus makes it a point to ask how i’m doing. this time, when he heard of what “I’ve done”, he was perhaps really done with me.
he learnt that i took up a part-time job because of my financial difficulties. then he found out i went back into nursing for that, despite leaving nursing earlier because it has stressed me up so much. he calls it “self-sabotage”. i told him i don’t have a choice.

he shared with me that he had spoken to my rheumy about me. what he shared, would later kill me on the inside. basically i was told that with me my rheumy was very cautious with even giving me MTX. she thinks a lot of my pain is caused by stress. and so she believes quite strongly that my pain will be “better” if i could reduce the stress, or learn to cope with it better. and with these i died on the inside, holding myself together on the outside because i was “difficult” enough. vivid memories of the past when she told me my pain is psychosomatic still haunts me. 

my pain to them, isn’t real. and this is something i cannot comprehend. i recognise that stress exacerbates the pain experience, but the pain is rooted in the diseased self. not my inability to cope with stress, nor  my “self-sabotage” in inadvertently stressing myself just to cope. 
when a person invalidates my pain, he/she invalidates my being, and my desperate attempts to cope and live a life of normalcy as far as possible. when they do so they’re telling me that i’m not doing enough, or that i’m in pain because of my inabilities. i wish they’d stop trying to understand me when they are not  getting anywhere near the truth.

all of these bother me because it consumes a large part of me, and it is something that i yearn relief from. i really need to stop the emotional abuse that i so many times, tried to be rid of. i don’t think i deserve any more of this than i am already going through.

it’s time to stop.

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.