Tag Archive | lithium

better days to come

the month of June is coming to an end, and i think i can’t wait for a much better July.

3 lacerations (and consequently 2 surgeries by hand surgeons and another minor surgery by the emergency doctor), had wound dehiscence and wound infections (MRSA and Pseudomonas), was held overnight for observation twice in the psychiatric hospital, had currents three times, had lithium upped, and then all these while having school and a paper to submit. sigh.

just saw my psychiatrist today. stopped further currents. adjusted my medications (lithium level [1g] is at 0.9). continuing therapy. and then praying for the best.

i don’t think i can relive another June again.


 “My grace is sufficient for you for you, for my power is made perfect in weakness.” I will all the more gladly boast of my weaknesses, that the power of Christ may rest upon me. For the sake of Christ , then, i am content with weaknesses, insults, hardships, persecutions, and calamities; for when i am weak, then i am strong.

2 Corinthians 12-9,10

 

 

tough luck

my day doesn’t start until i’ve downed the pills that are due in the morning. but that is only if i’m fortunate. sometimes, my day starts even before the previous one has ended. but what can one do? during these times, pain demands to be felt and/or insomnia screams at me to stay awake.

i am nothing without my painkillers. i take a lot of them on bad days, but painkillers, even if it’s just one type, are requisite everyday. i wonder why some people take issue with that? i escalate my painkillers in order of strength so i don’t take them unnecessarily. but that also means i experience pain longer than i should. there is the basic paracetamol (with orphenadrine, a muscle relxant). then there is an anti-inflammatory, usually etoricoxib (Arcoxia) at the highest dose of 120mg.  if the pain isn’t inflammatory in nature (it means it’s not caused by my RA), i skip Arcoxia and go on to tramadol. with tramadol, i have to titrate the dose myself by 50mgs because it is vicious in causing nausea and vomiting. my anaesthetist has given me the go ahead to take the max dose of 400mg a day, with a good supply of the anti-emetic metoclopramide. even so, nausea seems to love me very much. we decided that 400mg is worth the risk of serotonin syndrome due to the psychiatric medications i take. oh well. the last one the list of course, is oxycodone (with naloxone, Targin). i avoid this at all costs because of it’s addictive nature, and how easy it is to build tolerance to it. there is one that is not a painkiller though- ergotamine+caffeine- but it helps with my tension headaches. my anaesthetist finally resorted to this after months and months of complaining that none of the painkillers help with the headaches. when i’m fortunate, i take perhaps only paracetamol+orphenadrine. on thereally bad days, i take ALL 5 types, and the anti-emetics. oh did i mention topical diclofenac? yep. when pain gets resistant to anything, i get jabbed into my head//back/joints with steroids and bupivacaine. this is the reality of living with chronic pain. and years into this, i’m already quite fortunate right now in that i don’t need to rely on daily steroids, and my RA drugs. my RA disease activity and fibromyalgia has evolved over the course of years. now fibro inflicts more pain than RA, and i don’t know if this is better.

the rest of the drugs are a must. why do people call anti-depressants happy pills? i currently take escitalopram (Lexapro) and fluoxetine (Prozac) for the my mood. do they make me happy? no no no. but to be fair, i’ve never not taken my anti-depressants for a continuous 6 years. i don’t know a life without them, and i can’t fathom it either. if these “happy” pills are helping me to function minimally, i dare not imagine having anything less. i also take pregabalin (Lyrica) to augment my psychiatric medications. it helps with perpetual anxiety. but actually more than not, it helps me with chronic pain. this drug i struggle the most, because of its cost. i’ve sacrificed half the prescribed dose most times because they cost too much, even with subsidies. and that’s a regret because at its full dose of 600mg/day, it helps a lot with pain. but that would cost $400-$800 a month for that. my parents nor i, can afford that. or let’s just say i think the money could be used better. i can’t live without Lyrica too, just like the “happy” pills. i also take lithium carbonate every night to augment my other medications. it’s made me less “murderous” (towards myself), and if even with it i could hurt myself so much, i can’t imagine the disinhibition  if i’m off it. taking lithium is not without risk too. it can potentially affect the kidneys. the last ones would be the benzodiazepines, clonazepam (Klonopin) and diazepam (Valium). i can’t leave the house without Klonopin because it it what gets me through an anxiety attack. Valium, i’ve been taking for years to sleep. i’ve had insomnia for several years now. there were times when i was working living on merely 3 hours of sleep. it took me and my doctors years to reach this low psychiatric pill burden. and it hasn’t been easy. in fact it’s been more frustrating than trying to work with the pain pills.

and all these, are just pills to MANAGE my conditions. there is no cure. and this is the reality i’m grappling with. until now.  do i not wish that one day i do not need to swallow any pills? do i not wish that i can stop having blood tests to monitor my blood and organ function? do i not wish that pain will cease to be my reality? and do i not wish that i can retain a reasonable amount of sanity (and safety) without any pills and ECTs?

i don’t sit around to wish for all of these to happen. there is no point, really. i just do what i can to inch along. and if these pills help me with it, by all means. however i still struggle despite and in spite of me managing my symptoms.


i still lie in bed, moaning and groaning, refusing to get out of bed because of the pain and stiffness. i still ditch my pillow because it sometimes causes headaches and neck pain. i still can’t sleep supine with my legs straight because it hurts my back big time.

i still get cranky when i can’t manage my pain. i still have my mood swings when i’m out because i get triggered, because i’m irritated/frustrated, or because i suddenly feel extremely upset. i still withdraw and isolate when i run out of energy keeping up a facade or with interacting with others.

i still cry in public, on bus rides, while praying in the adoration room or church. i still cry because i’m up to the neck with pain and depressive symptoms, and hope is not in sight.

i still do stupid things that land me in the medical and psychiatric hospitals. i still do these stupid things because physical pain is more bearable than psychic pain. i still do these things because i know there is no cure, no reprieve, and it’s been too many years.

i still mess up my eating habits because i’m huge and i still long for thinner days. i still mess up my eating habits because i am still obsessed with the numbers. and i still mess up my eating habits because there are a lot of people i know who have seen me at my lightest and i am absolutely grotesque now.

i still nap unnecessarily and/or excessively because i don’t get enough sleep at night. i am still perpetually tired and it’s my legit look every day. i still nap on the bus and miss my stop for far too many stops. and i still use my tiredness as a reason to get out of things and/or stay home, but only rightfully so, which not many people believe.


my friends from my community describe me as a “fighter”. i deny it and reject it, because i am merely doing what i can to survive. and it seems to be the only life i’ve known for a long time. there’s nothing “strong” about me- in fact i’ve been called weak, and i probably agree with it too. but perhaps i don’t give myself enough credit. a fighter? only by God’s grace.

recovery (psychiatric-wise) is not essentially the goal. it is the process of picking up myself which was shattered in to smithereens time and again. it is the process of learning to love the self and loved ones. it is the process of learning self-care. it is the process of learning that i deserve better, and not the shithole i put myself in.

acceptance and coping (chronic illness wise) is a daily fight. it is the process of understanding and accepting the pain, and embracing it. it is a daily fight to not let the pain define the self. it is a daily fight to hope even when there is none, because sometimes all we need is time and perseverance.

life’s a tough fight. whoever said it’s gonna be a bed of roses anyway?

mostly better

30 days of the Attack on My Left Leg (ALL) has just passed.

i made a resolve to be walking without my crutch this week, especially when i’m out of the house. i’ve had some near-misses, but after 4 days i am still unscathed. there’s still some numbness in my foot and my medial thigh. but the strength is better than it was. of course it’s still weak and i can’t even try to run for the bus or the lift. but the exercises that i did helped a tad. i have been having nightmares where my left leg has gone totally numb and motionless. i hope that will never happen.

pain-wise, my shoulders are better than when i was in the hospital. if anything, my lower back and my head hurt more than my shoulders. i’ve been able to cope without opioids. my anaesthetist didn’t know what to do with my back pain except to loan the department’s TENS unit to me to tide me over the next 1 month.

my mood on the other hand, did not improve with the increased lithium. sigh.

 

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.

 

this palpable sense of fear

my hands tremble as lithium course through my veins. the number on the weighing scale climbs as risperidone works in my head. i cling onto these psychiatric drugs nevertheless, like i’m clinging on for my dear life.

my mind is littered with question marks. a storm of perpetual anxiety brews in my head. i feel like i’m in a pressure cooker. i am scared. why? why again? i guess i’ll never get answers. and i guess i’ll never be able to cope in the way everyone wants me to.

they say talking helps, especially when depression is isolating. i’ve tried to talk. but there is always this sense of some certain expectation that i don’t want to face nor handle. i keep trying anyway, even though each time that i try, a little part of me dies.

i will always be afraid of falling. but more afraid of picking myself up- the terror is unspeakable. and sometimes, i think i’ll be content staying broken and fallen.

i take each minute as it comes. the fear of the next minute going wrong is palpable. something might happen something might happen something might happen. i regret not bringing clonazepam out with me.

my hands tremble even more, as anxiety swallows me whole. things are not ok. i am not ok. against what it looks like, everything is falling apart. and no one knows what it actually feels like.

all’s well with rheumy!

i finally saw my rheumy again. i last saw her on 30th Sept 2014. what transpired after can be read here, herehere and here.

i made the appointment to see her again, after defaulting on her months ago. i only did so after discussing this matter with my psychiatrist, because seeing her can have grave implications. that was what happened last year, and it is quite traumatising looking back at it now, when you are at a good place in recovery. i never want to go back there again. the reassurance i had that made me go ahead to make the appointment to see my rheumy was my psychiatrist speaking to my rheumy over the phone. i made him tell her everything that transpired right after 30th Sept 2014. everything that i couldn’t tell her, he told her. every action i made which would make anyone wince, he told her. and the aftermath of what happened that stretched into the months after, he told her. i wanted him to tell her how much she was hurting me without she knowing. it was not revenge, or wanting to make my rheumy feel bad. to continue a therapeutic relationship, there has to be understanding on both ends. because it was only one-sided, making my psychiatrist talk to her would balance it out.

i told myself that i would give her and myself one last chance at this. after all, she has been my rheumy for 7 odd years. that’s a long time. she knows me very well. and i i love and respect her very much. to give up the patient-practitioner relationship would be a pity, but it would also be one i am prepared for. it has gone on for too long.

i prayed and i promised myself not to cry and not to yield, before i went into the consultation room. when i went in, i stepped in with no expectations. i didn’t want to be disappointed. my rheumy spoke to me like nothing bad ever happened. she behaved as though my psychiatrist never called her; initially. and as we went along the way, i realised she was being careful. she was listening more and avoiding certain trigger words. it made the whole consult a lot more comfortable. i had to once and yet again, convince her that since going off all DMARDs and NSAIDs, i’ve been out of control with a lot of stiffness, unpredictable flares, rheumatism, and no anti-inflammatories. she seemed to finally get why i have been so distressed. i don’t care if my stomach isn’t working well. it troubles me, yes. but it’s the lesser evil, compared to RA.

so… she engaged me again, like she always did in the past, in discussing what drug we should use to suppress the active inflammation. the first one out the door, prednisolone. she knows why. i nodded my head. then she talked about the COX-IIs, which i’ve told her before is an issue with lithium due to interactions causing prolonged QT intervals. still disputed, but she ordered some, and asked for the pharmacist to call her. next, HCQ. i told her it’s like a sugar pill for me and the need for yearly eye checks. she refuted it, citing its efficacy and changed guidelines to something like eye checks once in 5 years? i told her no. she jumped to MTX, skipping SSZ, because she thought of the pill burden. i was ok and good with MTX. once a week is great. and it works well for my disease activity. only worry is my liver. we know 15mg is sadly my threshold (i used to be able to take the max of 25mg!) so we are settling for 12.5mg. oh well!

she declined my request for shoulder injections. because of that i daren’t ask about a hip injection too. i understand steroid injections are not meant as a long term solution and there are detrimental effects to the anatomy of the joints. so i could only agree dejectedly.

out of the consultation came a resolution that i longed for, for almost a year. stopping my MTX and SSZ due to my transaminitis was understandable. but not restarting it on excuses of my GI issues, then saying i am in “clinical remission” was something that i absolutely abhorred.

and of course days when fatigue is much lighter, and flares non-existent at all. it’s a dream, and i can only hope. i was given the green light to take celecoxib(Celebrex) 200mg only on a very PRN basis, to minimise any interactions with lithium. and for that i am glad. at least i have another pain medicine.

i walked out of the hospital and made my way to my afternoon shift, a little more light-hearted. today was a good day. nothing negative came out of my rheumy visit, which i was surprised by. perhaps doctors on the same treatment team should really communicate. my psychiatrist talking sense into my rheumy did good, and for that i am grateful.

happy happy happy that i’m now back on DMARDs! yay!

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a day ruminating

1 day later, i’m upset.

  • despite my sub-acromial steroid injections, rheumy did tell me that my shoulder pain might really just be trigger points- can you see how fibromyalgia is a convenient diagnosis here? i said nothing to argue; it’d be futile. she’s the rheumy, while i’m the patient. she thinks i’m doing very well globally in terms of RA. so i guess the only joints hurting must be to do with fibro then?
  • while Dr C thinks a lot of my back pain and fibromyalgia pain is derived from my sacroiliac joints and recommends to inject them, rheumy doesn’t think so. she has never thought of it for me, because sacroilitis is very rare in RA. but can’t i be an exclusion? this has bothered me since 2009 till now and it has not yet been addressed until i saw Dr C.
  • and why do i questioned so much when i say lithium prolongs the QT interval if taken with ALL NSAIDs except sulindac? it’s been checked to death by several pharmacists, so why be so insistent? if i could take Celebrex or Arcoxia, i’d gladly take them and not start to consider if i should go on steroids. i’m that desperate. Dr C didn’t believe me too until he checked it himself. so now rheumy will ask the pharmacists herself.
  • i get peeved, even if it is with kind intentions, when it is said i am on a lot of pain medications. IT’S BECAUSE I’M IN A LOT OF FUCKING PAIN that nobody can help me with hello. stop commenting. i’d love very much not to take all these painkillers. but i’ll keel over in pain if i don’t.
  • then one whole long list of bloods are being ordered for me when i’m not on any DMARDs. i’d fully understand if i’m on MTX and/or SSZ. but I AM NOT. so like i said in my last post, i’m not keen on doing them!!! whatever for! maybe my Vitamin D levels and ESR. but my ALT, AST, Albumin, Creatinine, full blood count, or even ferritin(when it’s so normal already!), no fucking way.
  • we spent 40 minutes during our consult in total including the injections. but she forgot to prescribe the most important tramadol and muscle relaxant. she last prescribed them to me!!! all i could remember was pregabalin because it’s expensive in private practice, and even for this i had to run back to ask the nurse to get her to write a script for me. but it’s only this morning that i remembered i was running out of the most important tramadol and Myonal/Anarex.

i wrote an email to rheumy (i sometimes do that), telling her why i was so quiet yesterday, and explaining to her that i was not more depressed than usual. i was a little glad i wrote that email. but now i still feel like shit. maybe, you know, it’s not my rheumy.

the problem lies with RA and fibromyalgia. if these don’t exist in the first place, i think all would be well and dandy.