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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.

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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.

the death of me

i took 3 days off after finishing my last modular assignment. it took me so long to get back to work, to return to continue working on my thesis, because i was in sheer denial. i was utterly convinced this is the thesis which will destroy me. i sat down today reluctantly after taking Ritalin; Methods. how do i write this damn thing. i don’t know how. with every word i typed, every sentence, i balked quietly. it wasn’t academic writing. it was mere schoolgirl writing. i couldn’t find words and adjectives. thesaurus has been my best friend but even it fails. the most gob-smacking experience today was when i wanted to include descriptive statistics in my paper. i remembered that when i met my supervisor, we didn’t do it. so i prepped my data for analysis, but realised i might have missed out on one piece of data. did some checks, tried to really recall if we did anything about it. nope. so i messaged him and asked him and all. i didn’t even need to provide him with any hints, but it was clear as day to him that we did a whole host of stuff with the”forgotten data”. i had NO MEMORY of it, while he tried to convince me that we did this and that with it. i apologised. (and although i told him “ok!” i still don’t remember anything). this was only 2 weeks ago!!!

it scares me, to be honest. i was actually starting to think, since my last post, that my memory is either getting better, or it isn’t as bad as it seems. then today… i tried talking about this to my parents or close friends, but it seems so unfathomable? i don’t know. nobody understands that actually, before 2010, my memory was something that i was really proud of. my memory was fantastic, until the currents over the 7 years, then this really is the worse i’ve ever had…  and i don’t know what to do.

*slit*

again

it’s probably nothing.

but 3 days ago it suddenly dawned upon me like some revelation that something was wrong. the failing memory seemed pathological. my knees have been buckling more. i have been experiencing an odd loss of balance. when pieced together they pointed to the brain as the root cause. i was reminded of last year when i had weakness and numbness in my legs and the neurologists had to rule out Multiple Sclerosis. they did, but my left leg remained weak since. the MRIs of my brain and cervical spine showed suspicious “spots” which the neurologists said could be nothing, but at the same time they also could not be definite about that.

2 days ago, i was due to see my psychiatrist. i asked him about the amnesia- the word finding difficulty and problems with memory recall which happened some time after my last ECT. he said it was uncharacteristic of ECT’s side effects, and he ruled out any possibility that my diagnoses, medications or ECTs were causing such amnesia. he also thought i had a malar rash actually. so he told me to see a neurologist and my rheumy and ask for their opinions. after that, i promptly got a referral and appointment to see a neurologist.

yesterday, within less than 72 hours of figuring things out, i saw the neurologist. he looked into my previous MRIs and agreed with the doctors last year that it didn’t look like MS. he did a full neurological exam, and said that my symptoms are manifesting rather mildly. and i agree, although it still affects my daily life. he noted hyperreflexia (though not to the point it is pathological), coordination problems and limb weakness. however he was most concerned about the memory.

so we are going to repeat the MRI with contrast. honestly, i don’t expect any changes in my brain imaging. i seem to have this propensity to have physical symptoms without proper evidence, as shown with my struggles with my rheumy and my RA over the past 10 years. i struggle, but because there’s no evidence it must not be real. i don’t have any expectations that these issues, especially the amnesia, can be explained and/or treated, even though i am mad desperate because my final exams are in December and i don’t remember shit about any thing i have learnt since April. in a way, i’ve given up. resigned.

so yeah. it’s probably something. but it’s probably nothing at all.

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.