i feel sad today because…

chopsticks_step2

 

i used chopsticks like i always would, for dinner today. it’s my first meal today. it’s just noodles, easy. yeah.

but when i got in halfway through my meal, i said sorry to mum because i was taking a break from eating. my fingers hurt too much. my MCPs and PIPs felt like they were flaring. then i realised i am sorry not sorry. i don’t owe anyone an apology just because i went at my own pace.

picked up the chopsticks to finish my dinner again. mum was done and i was feeling guilty. my fingers hurt and in my mind whirls every single possible reason why this is happening again. my fingers were crooked by the time i finish, my face in a grimace. i had to straighten out my fingers with my left hand.

why is this happening when there is little/no disease activity going on right now???

ok shit yes whatever RA throws at me, i’ll get emo like fuck.

*verge of tears again*

wimpy rant

tension headaches
neck aches/pains
back aches/pains
fatigue
ANXIETY
all my meds
nausea
dizziness
aches/pains that don’t go away
more fatigue
more headaches
ANXIETY

i feel like i’m in hell. no i feel like this is worse than hell. i don’t know what the fuck is going on and i’m spinning on the merry go round like the fuck i enjoy it. AND LIKE THE FUCK OPIOIDS DO ANY SHIT FOR ME. i cannot do it anymore. i’m so tired i can’t sleep because my neck hurts and i’m nauseous and headachey. i don’t know why i can be so sleepy and drowsy for a stretch, and then tired but awake for another. whatever can be tried, i have already tried. so this is futile.

i take the paracetamol, the tramadol, the oxycodone for the pain, but it’s still all there. i take metoclopramide for the nausea, cinnarazine for the dizziness, eperisone for the muscle aches and tightness, rub diclofenac gel everywhere. i spam caffeine to keep myself awake but i still sleep. i take flurazepam to sleep but i’m still awake anyway. NOTHING IS WORKING. and then i pop and pop and pop lorazepam because i’m anxious everyday. all these on top of my usual meds.

i don’t know what’s going on. just give me my life back. if this is fibromyalgia at its best, please spare me. RA anytime. really. oh my goodness me. i cannot tolerate constitutional symptoms well. aargh.

i’m such a fucking wimp.

almost narcoleptic

i’m now so officially tired i just laugh at myself. dad even says in Chinese that i’m “tired in the morning, tired in the afternoon, tired at night”, and i’d be fine with it. because it’s so true!

now it feels like i’m bordering on narcolepsy. aargh.

i am thinking it might be my withdrawal from pregabalin. maybe cutting 300mg (which is half my dose) in 2 weeks is too fast. it’s my sick idea of torturing myself, but sigh i do get really impatient to such extent at times. anyhow, i’m having flares in my neck and back too. i’m wondering if it’s fatigue feeding into the tiredness, or it’s my meds making me drowsy.

i recently switched to Oxycontin from Targin, also from 5mg at each dose to 10mg once a day. i don’t take anything more other than that. but i get drowsy in the afternoon.

i really hate being so tired, and i hope it really is just withdrawal. i have to think about something else for the pain though, although i could really just give in and just settle with being fat and all, if it is what it takes to keep me sane and stable. in a way, i’m thankful that work got delayed. i’m not starting just yet because they got caught up in some paperwork issues. by the looks of it maybe another 2-4 weeks. hopefully everything should be better by then.

we made sure we watched King’s Man before brother flew back to Vietnam today. damn it was such a good movie! haven’t watched a good spy movie in a while. oh i loved Eggsy!!! and Roxy kicks butts so much, she’s so good! by the way, Chinese New Year was so painful. there was so much eating. and then there was entertaining. difficult when you’re tired, and when we have 2 dogs who cannot stop barking. dad is flying to China next week to resume work. sigh. then it’s just mum, Sam and i with the 2 doggies. :(

when RA triggers me mentally

 

 

 

 

i was studying Module 8 of my EULAR Rheumatology Course, and i think there might have been some transference and maybe even some projection. ugh it was so bad my anxiety was escalating i had to put it down till i’m ready to face it again. the story is complicated. but in my eyes she has failed me terribly. so as much as i wanted to be as calm, i couldn’t. inside me i was still pretty much trembling in fear. fear of what? the hell i know. damn it,

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driving me crazy (part 2)

it’s not over. just minutes ago, dad triggered me again.

it’s the 2nd day of Chinese New Year. on the 1st day yesterday, i tried to reconcile with him by forgiving him and talking more to him. but today, just an innocent conversation at 10 in the morning had to break it.

he commented that he noticed i had more acne lately. i told him i blamed the medications. he dragged up the past about the time when i was diagnosed with RA, how he was in denial with my diagnosis, and how he abhorred me taking Western medications. it really explains his hostility to my rheumy. and his passive hostility to my taking of my medications. he thinks Traditional Chinese Medicine (TCM) will “save” me. or so he thinks (his brother is a TCM physican). i told him TCM will bust my liver. he hasn’t yet grasp the concept that RA cannot be cured.

i told him chose not to, because there is no evidence for TCM being effective in RA. and also, TCM is more hepatotoxic, especially in the long run. i reminded him my liver wasn’t good. i didn’t however, remind him it was due to methotrexate and leflunomide. DO YOU KNOW WHAT HE SAID???

your liver is weak due to your OVERDOSES!

my heart broke. shattered actually. i didn’t think my dad thought like that. it seemed like with each passing day, month and year, the parents i know aren’t the parents i knew.

now my dad has walked away. in a rage of fury, again, i told him, in that 4 years perhaps i shouldn’t have fought so hard to stay. for what? i wasted their money. according to them. so yeah.

driving me crazy

i’m tired of fighting, or trying not to fight, with either one of you.

both of you are my parents. we love each other. we express it differently. but can you please, i beg you, spare me. don’t tell me things like “why are you so sleepy?, “don’t sleep so late”, “why do you wake up so late?”, “don’t rely on sleeping pills”. like the fuck? are you listening to yourself? shit is coming from your mouth. i am tired because of my RA+fibromyalgia+depression, which i have tried to explain to you, but you have refused to listen somehow, or have been in denial. i don’t like my sleeping pills, but like i also explained to you, when i don’t get enough sleep, my mood gets worse, my body hurts more etc. so please don’t be the fucking monster you were, the antagonist, when i was just 15. you seem to be the same after 10 long years. oh and of course you don’t know. i’ve not been taking my sleeping pills for more than a month. you wouldn’t know that would you?

and you know i am a feminist, bordering on a misandrist. dad, could you please not be such a male chauvinist and make related remarks to me? you made mum stay at home for health reasons almost 6 years ago, after she was earning the most income for 2 decades or so. you started becoming the sole breadwinner, and that makes you the MAN? or hell no. you are not the man when you deny that your daughter is sick. you are not the man when you deny that your daughter is incurable. and you are definitely not the man when you make your daughter feel like the littlest person in the world by telling me you could recover from anxiety disorder yourself. that’s insinuating, why can’t i recover myself then?

it’s not inspirational for fuck’s sake. it’s called rubbing in your face. it’s insinuation that “i could so why couldn’t you”, and “why are you still like that?”. and for the record, till this date, dad still thinks i can be cured from RA. NO DAD. NO.

so yeah. the last time i checked dad, you are anatomically a man. but not so much the man you think you are. so STOP IT.

i shouted at you to say that in the past, you resented me for not saying anything. and now that i am saying more, i get rained upon more. i’m dampened either way, it’s too fucked up.

brother’s home. and with more testosterone and a figure I have resented for more than half my life, i am definitely cranky.

the whole family thinks i’m gonna spoil Chinese New Year. i think they’re driving me crazy.

what gives?

the plan i have with my anaesthetist since i saw him last Thursday was to cut down pregabalin(Lyrica). but it does seem like his plans and mine are incongruent. i did try to tell him about my concerns, but there was only so much that was going in :(

  • pregabalin is too expensive, and a nurse’s pay cannot upkeep this prescription along with my other medications and doctor’s visits etc.
  • pregabalin made me gain weight about as much as steroids did when i was first diagnosed with RA. however this only really escalated when my dose was increased to 600mg.

he cut my dose to 450mg, but will only review me in 2 months. i still cannot afford it. and the weight gain is weighing heavily on my eating disorder this time round as well. i may need to titrate it myself. (i know, i’m being some bad ass here, but damned i need to do this…)

but as much as i want to say NO to pregabalin, i acknowledge it is helpful for my fibromyalgia. it’s less than 5 days that i just took off one white capsule of pregabalin, but my fibro flares in my back seem to be coming back. and the oxycodone don’t seem to be doing anything for it.

so what gives?

i wish there was someone i could talk to about this- someone who is trained in counselling and also in chronic illness. there is no one i talk to who can even understand half of what i talk.

:(