about 1.5 weeks after my discharge, and a little over a week after i finished pred, i finally saw my rheumy with so much mixed emotions. please understand that we’ve not dealt with a flare of this magnitude in 3-4 years. if anything i was deathly afraid she’d look at my inflammatory markers, and forget to look at and listen to me as a person.
despite so much morning stiffness and disease activity (shoulders, wrists, MCPs, hips, knees, feet/toes), my ESR came up at a laughable 19 and CRP at 14. years with my rheumy has taught me that the fear of her sweeping my symptoms under the carpet was all too real. i could only tell her how it has all been affecting me in a different manner. and this time, because of how our patient-practitioner relationship matured over the years, she listened. offered the choices of either more pred, or going back on methotrexate. added the option to get an intramuscular triamcinolone injection. i know she’s holding back with pred, and i would too. in the end i went with the IM triamcinolone jab and MTX 12.5mg.
let’s see how things go. triamcinolone has a half-life of 18-36 hours, so i’m hoping it won’t wear off soon. and hopefully with only 12.5mg of MTX, my liver will be ok.
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.
I’m almost at a standstill, not knowing where to go or what to do. It feels like there’s much more at stake now too. I simply do not know how to take another step forward when risks percentages have yet to budge. I’ll know I’ll fall again, even if I’ve left it all behind. And I know I can’t afford it.
reclaiming this life remains to be a constant struggle, and in itself begs to be answered as to how i can do so.
i can’t remember what normal is, and i can’t believe that there is a normal anymore. there is always too much, or too little, sometimes none. every single aspect of life has fallen victim to it. there seems too much to regulate, that in the midst of it i lose my bearings and often fall flat. sometimes i return to status quo, most times i worsen and get triggered.
in my admittingly unwilling recovery, i thread on the thin line between life and death. i take consolation that i am still around, and mind you i do so, so that others recognise my effort. but i’m hypocritical that way. i’m alive, but i’m dead. my foot steps into the realms of death more often than not, and…
no. i’m not ok. i’m not ok at all. and i don’t want to talk about it.
all i really wanted was a friend who was willing to sit beside me and listen to me. that’s all. i don’t want a friend to analyse what i say and rationalise with me. i don’t want a friend who tries to cheer me up or tries to be optimistic (which i can never be). i don’t want friends who tell me it’s gonna be ok, or that i should try harder, or that i should trust in God, yadah yadah yadah. and i have MANY friends who do all of these.
i just need all of you to shut up. i know you have good intentions. but just shut up.
because i DON’T NEED all these. and i DON’T WANT all these.
and so from here on, i know what to do. i really know what to do.