Mistaken priorities

day 15 today, and i am due for home. on day 14, i knew i i am neurogically cleared. but what i thought was missing- rheumatological intervention was missing. i had the impression they would at least start a DMARD or something.

after all, they found sub-acromial and sub-deltoid bursitis bilaterally. on the left they also found supraspinatus tendinopathy. all these are caused by inflammation right? right. 

when i asked the junior doctor of the (lousy) rheumatologist what they were going to do before go home, she said these:

“your ultrasound of your shoulders back in 2011 shows the same as what the MRIs show now.”

“anyway your pain is being managed by the pain team. i even heard that they lent you a TENS unit!”

“you have to wait for that whole month to see your rheumy. she can titrate your medicines. you are are so lucky. some patients wait even longer than that to see their rheumatologists.” (it’s only near for me because when i was discharged last week, they requested that i see them earlier.)

i was furious. firstly, i did not ask for shoulder MRIs. if i knew they would be nonchalant about it, i would have said no. secondly, i requested for their participation in my care to find out if the weakness and numbness of my leg is caused by some thing rheumatological. they completely digressed from why they were involved in the first place.

when the doctor left, i was left on the verge of tears. it felt like history was repeating itself again. i had pain. it could not be seen nor felt. my pain thus cannot be believed. i was stuffed with painkillers. but my joints still hurt from the inflammation. my joints are fucking flaring still! and so with each rheumy visit i beg for something to be done, but perhaps i was only truly helped 20% of the time. i don’t think i was ever truly believed to be in pain, to be honest. the word “psychosomatic” was commonly used, especially after i fell into depression. and if one would think of it, if my shoulder inflammation was managed well enough 5 years ago, it wouldn’t still be as such, and so chronic as well, resistant even to Arcoxia.

my shoulders started to hurt permanently since June 2015. they were the source of me maxing ‘out painkillers with my anaesthetist. we tried intra-articular steroid injections, which did not help, but only increased my steroid load. 10 months later, i made the tough choice of saying that I’ll give up trying to quell the the shoulder pains. both my anaesthetist and rheumy are agreeable to it. i had to accept that my baseline of pain wasn’t 3-5 over 10. i had to reset that to ZERO. like nothing is going on. it felt only right to do so, because being in pain and being fixated on it Everyday is exhausting.

and so the equilibrium that i had found after years and years of pain and anguish, is now thrown off again. because why? they don’t want to treat me despite hard evidence and elevated inflammatory markers. to them it seemed like it could wait. but there is only so much that analgesia can do when inflammation exists.

i don’t know if my anger is justified, but i have had enough bullshit figuring ways to quell all the inflammation, by rheumatologists who think my pain is all in the head, who think that symptomatic treatment is not a priority, and that i could just be managed by the pain team.

i have made it known that i do not want to ask for opioids. and that if my RA is  treated, then perhaps i don’t even need to take that much painkillers.

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