working memory #3

infusion day, round 4: a stream of thoughts from the chair

orencia can take up to six months to take effect (sometimes longer). i started to notice a slight difference in my RA symptoms (specifically joint pain & stiffness) after round 3. it’s still too early to tell if this will work long term, but i’m starting to feel some semblance of hope bloom.

on tuesday the ophthalmologist confirmed uveitis but also taught me about basal & reflex tears. i wasn’t aware there are 3 different types that serve their own functions. (emotional is the 3rd) even with the numbing drops, the Schirmer’s test (thin slips of paper on both lower eyelids) stung; i’d like to never experience that again. i’ve struggled with dryness for nearly 4 years, but i wasn’t prepared to be told just how dry my eyes are: my left produces 0 basal tears (the type that the eye constantly produces to protect and lubricate the eye & cornea) and my right only produces 2-4. “you should be producing at least 12-14-around 2 microliters a minute.”

he added 2 different eye drops; the rheum added 2 more meds last week, so that brings my current medication count to 5.

today’s stick count was 3; i wanted to avoid the hand but back in the right hand is where we ended up. small veins mean small needles but apparently, there’s been a shortage since Helene.

i would like fatigue to release me from its death grip.

if i had to choose between humid weather & cold weather, i’d choose humid because its effect on my body feels more tolerable.

i keep thinking about what aging, longevity, & quality of life will look & feel like beyond 42…at 52, 72, 82…is it possible to reach 92 with Sjogren’s, RA, or any autoimmune condition? will treatment always be fumbling around on the floor in the dark? does it require constant experimentation?

and my mind is always on the costs. being unwell in any capacity is costly…at least or especially so in this country. even with insurance, the amounts in the “what you owe” section of the EOB have compounded quickly over the last 4 months. 5 medications, 5 different costs to carry for this 1 body.

next time, i have to remember to bring a blanket. (and the ear pods)