Archives

so just last week, in my first week of work (yay?), my RA flared up. i haven’t had such a bad flare in years, and aside from the marked morning stiffness which rang alarm bells, joints which have not flared in the last few years flared up to say hi. my walking cane came into good use again. after the concurrent first 4 days of work and flares and Arcoxia 120mg not working, i raised the white flag. i brought myself to the emergency room at night.

i had my reservations due to my experiences with going in for pain previously for pain, for very fortunately, all was fine and the doctors were very kind. they admitted me (first time for my RA), and when i tried to say no, they persuaded me to, on the account that i even have walking difficulties already. so it was a 24 hour stay. very brief. we just needed my rheumy to see me in the ward and decide the course of prednisolone for me. my inflammatory markers were very underwhelming, and i had to keep explaining to all the doctors examining me that i am seronegative, and my hands are largely spares. So yes, no sky high ESR and CRP, no classic RA hands. i think the only thing that was grossly swollen was my popliteal bursa.

was given 30mg of pred in the emergency room, which helped some. then rheumy decided on just 5mg for 5 days, and an appointment to see her a week thereafter. i just finished the course of pred, but RA is still making me very miserable. i am reminded how i came to be on pred for one long year when i got first diagnosed. these flares just won’t go away.

tired, and just trying to be okay as the inflammation gnaws away at my joints. sigh. you’ll be okay, steph.

Advertisements

eighteen

2017 passed me by like a nightmare i couldn’t wake up from. it has been excruciatingly painful.

i can’t remember the details of much (due to amnesia), but i know that i struggled a lot with physical and psychic pain. i never stopped trying to crawl out of the depths of unending darkness, because of the obligations i had to my family and to school. but i kept falling. i was in the emergency room so often- poked and prodded, cut up and stitched up, sent into surgery, and nights spent alone in the hospital… consequently, i too submitted to ECT even more, just to quell the dysphoria which haunted me perpetually. i’m not proud of it, and i know for all of these that i go through, i am ashamed of myself and by all others. but this is the best i can do to extend my existence.

but in the midst of the pain in 2017, i witnessed the great and unfailing faithfulness of God, and His perfect love for me, His child so sinful and sorrowful.

in 2018, may i learn to be little, to trust You with a child-like faith, to submit to Your divine will, and to love You with all that You have made me to be (and so much more). 

failing flesh

i find that increasingly, i am writing in this blog because my memory is poor these days, and referencing back to these entries help me with memory recall of my life’s events, which so often slip through my fingers like sand.

i had my follow-up with my neurologist a few weeks back. while i was happy to report that things didn’t seem too acute right now and the symptoms appeared to be episodic like last year, i was still having issues with my memory, and word-finding, limb weakness here and there, and knee buckling.

he thinks some of the medications i take may be contributing to these symptoms, such as lithium, topiramate, escitalopram, and pregabalin. however to my surprise, without me saying anything, he actually understood why i needed them and at such high doses (for my diagnoses that is).

he relooked at my scans, and apart from the leukoaraiosis that the radiologist reported, he told me that in his experience and opinion, it does look like there is cerebral atrophy.

a quiet and calm wave of panic washed over me. i don’t understand. first they only reported to me after a year they scanned me that there was leukoaraiosis, which was uncharacteristic of my age, and they also could not find out what’s wrong. then the symptoms affected my dissertation writing, and also my final exams, and i am told there is cerebral atrophy, but there appears to be no apparent cause despite my signs and symptoms. how did parts of my brain waste away? and what will all these symptoms and findings mean in the long-term for me?

there is so much uncertainty… but i guess, with all things health-related, some things can’t be explained.


in the midst of a great fibromyalgia flare. my anaesthetist jabbed my shoulders, decreased my topiramate to 25mg BD, increased pregabalin by another 150mg, and added eperisone at my request. aarghhhhhhh I HATE FLARES.

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.

 

538086_10150646066895784_1643580726_n
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…

 

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!

recovery

to be entirely honest, the state that i am in right now is rather disconcerting. recovery never felt like this, all these while in the past 6.5 years. it’s been 2 months since i entered this stage of normalcy where nothing quite happens. everything seems monotonous and flat. and i then i wonder if this is really life? it feels so awkward?

despite still being on a school break, i still try to keep up with managing my pain. pain always seems to outrun me, and then also the painkillers that i’m willing to take. painkillers, anti-emetics, physiotherapy, tennis ball, acupuncture, TENS unit. despite all these i still can’t keep up. i also have psychiatric appointments to keep every week, and they make me so tired *phew*.

my friends tell me that they noticed that seem more joyful, more at peace (really??). 2 months of normalcy hasn’t been easy, and i wonder what it would be like to lose it all again. too easy. i know i am very vulnerable right now, especially with visual triggers. and i know i will fall again if i lose to my impulsivity. but no one ever said it was easy?

let’s just pray that i will keep wanting this. because i sure am hell ain’t used to this.


after edit:

i don’t know what clicked. how recovery could’ve eluded me for 6.5 years, and it happens just like that??? i know it must’ve been divine intervention.

but nevertheless, no matter how rosy it seems, the struggle seems real. i still have bouts of sadness, but i do feel inexplicable joy at times. i don’t hurt myself anymore, but i had an incident, and i get triggered constantly and the threat of falling any second is very real. most of my other symptoms have improved from the tireless pursuit of psychiatric medications.

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!