mine to bear

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quiescent?

i’m angry because i’ve never been quiescent yet all the doctors who look at me, palpate my joints, and quietly write in their notes that i am quiescent. do you think i do not know you wrote that DISGUSTINGLY VULGAR WORD?

you could not even ask me a simple question like “how does your RA make you feel?”. i do not learn psychology. but i am a nurse who has some teeny bit of background in psychology and patient-practitioner relationship. i am a chronic illness patient. i receive therapy from a psychologist (who has a doctorate) and a psychotherapist (who is a psychiatrist). and i learn. that such a simple question would suffice. really.

you “do not ‘mock’ a pain that you have not endured”. not even quietly. deliberate or not.

i hate to admit this but i do have more good days than bad with my joints these days, that i take it for granted. but what constitutes quiescent to you? DAS scoring? i didn’t see that. gut feeling? maybe. what you see is what you get? probably the most accurate.

i’m angry, yes. i’m angry with myself. i’m angry with a body that fails. i’m angry that i’m not strong enough for this monstrosity called RA till this day, that almost 8 years after an official diagnosis i am still grieving. i’m angry because i fight and yet it is not enough because RA is written in indelible red ink in caps. and i’m angry because i haven’t grown all these years, in opening up and telling others that i am in pain and that i need help.

at the sad time i’m sad because i’m trying my darndest here to be a “good” patient. not to please anyone primarily, but to easy my symptoms and get my RA as soon as possible. things were not on my side. i’m sad because i’m seronegative- rheumatoid factor -ve, anti-CCP -ve, ANA -ve, only repeatedly elevated inflammatory markers. everytime i see a doctor i feel like a failure as a RA patient that i tell them “aargh don’t bother” when they start palpating my finger joints. i’m embarrassed of being sick, yet “not sick”. that makes me ashamed and sad of what i have in front of doctors.

i’m scared of telling or showing others my weakness that is RA, in school or in work. i’m afraid of being judged, which i already was, for “making excuses”, when i was in my dancing days. so i stay stoic. is that what i should call it? and i bear no signs that i might be ill. nobody knows. and again then i become afraid that because of RA something affects my work. i’ve done everything i can to be normal. e-v-e-r-y-t-h-i-n-g. and i insist on being nothing less. but because of this it makes way for more mistakes. i’m scared, because i don’t even forgive myself.

i’m annoyed because i live with my RA symptoms for all the glorious 365 days of the year. i see my rheumatologist 4 days a year. and in that 4 days, it is only a mere 10-30 minutes. so let’s see. in a year, at best, i see my rheumy for 40 minutes to 2 hours out of 365 days a year. is that fair to me when that happens and all that is written is quiescent or in full clinical remission? i’m annoyed because i’m not an uninformed patient. i’m a nurse. i’m doing a EULAR rheumatology course that is meant for doctors, prior already reading rheumatology textbooks. i am not a doctor of course, and i never intend to be like one. but i want to know the battle i am fighting.

and i know, i am losing the battle. simply because i am “not good enough” a RA patient. simply because these pain are mine to bear.

i cried so much today as night fell. my joints started to flare badly. fatigue had creeped into me quickly earlier actually. because of the pain, stiffness and fatigue i felt like i couldn’t even hold my body up. my fibromyalgia started to flare too. and after i downed my tramadol, oxycodone, pregabalin and the rest of my night meds, i decided that alas, they did not touch my RA flares at all. it was like a hard slap on my face. i sobbed for God to take RA away, although i know it is for me to bear. i knew not how to, and it’s been years, i begged and pleaded so hard for Him to take it away. it was that unbearable.

i haven’t cried about RA in a long time.

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