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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*

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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.

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!