I have always felt like an utter failure as a patient, and today was a further affirmation of my failure. Why can’t i even get this right???
I had the long overdue ultrasound done bilaterally on my shoulders, wrists and finger joints today, much to my displeasure. Today’s ultrasound appointment was set awhile ago at the end of September, and i’ve been crossing my fingers all these time that somehow on this very day, i’d have all the flares possible in my upper extremity joints. How else will the disease activity be captured as evidence of the pain i am experiencing?
Of course as luck would have it, the converse happened. Why am i not surprised? IT HAPPENS ALWAYS.
The said joints were mostly pain-free save for the usual niggly pains here and there since last night, and no matter how hard i hoped, the joints did no flare. And so as i made my way to the hospital, i couldn’t help but ruminate about how all of these seem so futile.
What about all the excruciating flares that i endured the past weeks by going cold turkey on all my RA meds in my desperate bid for it to manifest physically? What about those inflammation which left me writhing in pain, and those limitations in my joint mobility? They don’t count for anything, as far as all of these are concerned. By these, i mean rheumy appointments, occasions in which an exam of my joints have to be made, and investigational work like bloodwork and ultrasounds like today’s.
And these happen how many times each year? 10 times? 20 times? Somewhere there, sometimes much less. Out of 365 days of the year. What about the rest of the approximate 345-355 days of the year? They count for nothing, it seems, as far as the evidence is concerned.
The thing is, when i experience symptoms, i report them to my rheumy in a bid to have my RA under more control so that i can take the issue of pain out of the complicated picture. But i present to her, in person and in investigations, as an RA patient with little disease activity. What i seem to be does not warrant anything more for my treatment.
Sometimes i feel like a malingerer, and do you know how lousy it feels to feel so undeserving???
I feel like a complete failure, through and through, as an RA patient.
It is times like these that i start to wonder why i even bother in the first place.
Why does RA have to be such an invisible disease???
I sat 2 hours in a stool with gel spread all over my shoulders, wrists and hands, and tried my darndest to stay very still while keeping my hair out of the messy gel, and maintain specific positions for imaging even though my joints hurt and my muscles are aching. Saved $510 of the original $600 bill as a subsidised patient. Was first taken aback by the extra charges for the numerous joints they had to scan, and then pleasantly surprised that i only had to pay $90 because of a cap.
Well in today’s ultrasound, no real erosions were found, which i guess is good news??? There were no active synovitis and effusions visualised as well, obviously because of the lack of my RA’s cooperation with me. But they did find some pockets of fluids(which is a sign of some inflammation), some thickening of the bursa, a little calcification here and there, and what not. I don’t really recall the entire 2 hour experience, but i think i’ll understand more of their findings when i see my rheumy the week after.
It seems like a lot of the excruciating pain in my shoulders are caused by the tendons and bursae, which according to the radiologist, can be very painful. And according to the radiologist as well, the extensor carpi ulnaris(aka ECU, the wrist on the side of the little finger) is commonly affected in RA, while the carpometacarpal(CMC) joint of the thumb is usually not involved in RA.