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too much

somehow it keeps piling on, as if i had the capacity to carry them all. i don’t, and i can’t.

  1. depression relapse (acute on chronic i guess???), but the ECTs did not help and i am again left to wonder if i can ever regain even a bit of normalcy.
  2. the stress from school is really breaking me apart. a dissertation, its literature review and its quasi-experiment (i still need 10-20 more participants by 4th September). plus 3 papers due from now till September 15. what would i do without Ritalin???
  3. Clover, our Pomeranian who was 13.5 years old, passed away from cancer (Transitional Cell Carcinoma). Our family was so broken by her death, and although it’s been almost 4 weeks since she left, we are all still grieving and aching. We were just glad she spent her last moments in the cradle of my brother’s arms (her favourite human and default owner). 😥
  4. Acute bilateral shoulder flare RIGHT AFTER i saw my rheumy. Arcoxia 120mg does NOTHING for the inflammation and pain, and it has been an excruciating 2 weeks. My anaesthetist is away, but i am FINALLY seeing his colleague in 2 days. Although i think i short burst of pred will just do the trick. I really need some relief. Fibromyalgia has been giving me signs it’s gonna be flaring soon too.
  5. the coping mechanism i’ve known so well for 7 years has been taken away from me after an event and admission. there wasn’t even a plan to cut down or something like that. cold turkey. it’s not going to end well, i assure you.

 

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i love you, and i miss you so much, Clover… run free and bark as much as you like ok? i thank Papa God for taking away your pain, for giving you comfort, and for holding you in His arms. i love you to the moon and back, and i’ll see you on the other side, my dear doggy…

 

this is the way, walk in it

in 72 hours, i presented myself twice (and no less) to the Emergency Department, afraid of bscklash, wallowing in shame and guilt. how did things become this way?

in June, and even now in July, i struggle. i can tell you that having faith itself and claiming to have head knowledge are a world of a difference. i know that in my utter brokenness, my faith is lacking. i don’t claim as much as i can, my identity as the beloved child and daughter of God. i always remember from retreats and from conversations with friends, about how Peter walked on water. i have to learn from him, in that he trained his eyes on Jesus- he had faith and he believed! because when his eyes wandered he sank!

i have to constantly keep my gaze on God, my saviour! i may not always know why i am triggered or upset, but i guess i just have to put my faith and trust in Him? and yes, i have to learn to open the door of my heart to Him!!!

“He destined us in love to be his sons through Jesus Christ, according to the purpose of his will, to the praise of his glorious grace which he freely bestowed on us in the Beloved. In him we have redemption through his blood, the forgiveness of our trespasses, according to the riches of his grace which he lavished upon us.”

-Ephesians 1:5-8

p.s. Haemoglobin has dropped to 8.5g/dL, but they said it wasn’t low enough for a blood transfusion. Hand surgeons said Palmaris Longus and Flexor Carpi Radialis Sheath both sustained cuts (ie damage) but they weren’t gonna repair it. On a backslab now.

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

 

 

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!

10 years

seeing my anaesthetist today brought back  many memories. the waiting, the feeble attempts to get my point across to the doctors, the plucking up of courage to ask for something, the decision to say yes to another medication, the sigh that comes with resignation…

it’s been 10 years since i begrudgingly said yes to my first diagnosis of RA and the treatment that ensues. the fuss over waiting times, doing blood tests and unpredictable results, imagings, complications, ever-changing prescriptions, side effects, new symptoms, rehabilitation, and the costs of everything. most of all, it is the constant struggle to carry on. but God gives me the grace to trudge on, to embrace the pain as it continues to keep me rooted to the truth in the cross. and most of all i am reminded to be gentle with myself. nothing comes out of being hard on myself, except bitterness and frustration. in the midst of these all, i am called to say yes always; to bear this cross with love and gentleness!


i was restarted on topiramate again to help with the constant tension headaches. bummed that my pill burden cannot be lessened despite my efforts in the last few years. i asked for trigger point injections in my back because it’s been killing me for many weeks now. so he gave me 2 bupivacaine shots. i was asked to try accupuncture and of course physiotherapy. couldn’t escape the question about exercise.


i can’t seem to escape the pill burden that’s haunting me for the past decade. i’ve tried deprescribing over the last few years, and while i’ve succeeded sometimes (especially with DMARDs), it somehow gets undone insidiously:

  1. Paracetamol+orphenadrine
  2. Etoricoxib
  3. Tramadol
  4. Metoclopramide
  5. Ergotamine+caffeine
  6. Topiramate
  7. Escitalopram
  8. Lithium
  9. Clonazepam
  10. Quetiapine

it still stands at 10 now, the number of prescribed drugs. and it drives me mad. but it’s ok; i’ve had worse. once again i am called to say yes to this struggle that comes with the cross i’ve said yes to carrying.


all these years struggling with pain has hardened my heart and made me bitter. i guess it’s time to reexamine how i will be coping with something that is inevitably a permanence in my life!

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

died a mini death


i’m tired. exhausted. the pain is getting to me all over again. it’s like a never ending game of “catch me if you can”. i’m always running. running till i’m breathless. the pain latches on like a parasite then, subjecting me to its whims and fancies. then i am so spent trying to make the pain better or go away. if not, i am stretched trying to be ok with the pain. i never really get to rest. not from these, not even from life.

i almost had a meltdown on Thursday. i had pretty bad sleep, pretty the same with the insomnia that has haunted me for years.  woke up at 8am. headaches crept in. trigger points started screaming. my shoulders are same old. i popped whatever painkillers and anti-emetics i have. i used the TENS unit and also the tennis ball. by mid-afternoon, i felt like i got hit by a truck. it was time to leave the house to see my anaesthetist. i literally had to drag myself out of the house. whenever i could, i’d try to curl up to rest my head. in the car, in the waiting room, in the bus or train. i felt like even my head had trigger points yelling at me to quell the pain.

my anaesthetist increased my pregabalin again to the max dose of 600mg. i agreed reluctantly because of the costs. (2 weeks of pregabalin costs $240!!!) we kept tramadol and etoricoxib at max doses of 400mg and 120mg. he finally caved in and gave me ergotamine although i don’t have true migraines (just really bad tension headaches that don’t respond well to tramadol).

i boldly asked him for trigger point injections beside the spine at the thoracic spine level. also, near my sacroiliac joints. he agreed, but i think it’s because he’s only injecting bupivacaine without steroids. he doesn’t like to use steroids on me anymore. because i was particularly sore and the jabs hurt more than usual.

i was very grateful to him. but my pocket bled from the cost of the medications. the pharmacist also gave me a scare with several of my pain and psychiatric drugs possibly prolonging my QT interval, because i already have a very slightly prolonged QT interval the last time i had an ECG. sigh.

i left the hospital still feeling like a wreck. i took the ergotamine almost immediately, with the rest of my painkillers. it took me about an hour to feel less uneasy. but 2 hours later, wham!!! i felt like i was hit by a train, and could drift off into lala land while talking to my friend. because of that i had to terminate the “dinner date” earlier than usual, and went home to be horizontal.

that was a true fibromyalgia flare, and gosh it was dreadful. feeling slightly better since. all the painkillers, ergotamine, sleep and being horizontal, helped. but the pain has killed my mood, and has robbed me of my energy.