wrought still, with questions

there is only so much that one can be helpless, and from then on… i can only say i can only pretend and play along.

i saw my rheumy today, and everything that i had begged for in her, i suddenly received when i was in the consultation room. was i surprised? yes of course! today was going to make or break it. does it change my situation? well, no. her empathy is a welcomed relief from her past invalidations of my pain, but my pain is still here to stay. i’m still count my blessings though, because her empathy means she is listening, and from that she is able to adjust my treatment to what we can BOTH agree on.

i say that this is pretty helpless, because now hearing from an orthopaedic and rheumatologic point of view, we still don’t know why i have rotator cuff tendinitis????

  • is it caused by RA?: unlikely, says rheumy. tendons rarely get affected in RA, but when they do the disease would have first damaged the joint first if anything. also, it seems like if even the shoulder is affected, it would be even further in disease that it can reach the RC tendons. (looking at RA disease progression, and how my rheumy explained it, if anything the tendons in the hand will first be affected, not the shoulder!)
  • is it mechanic then?: like, says rheumy. but we don’t know because we have no MRI and she wants to hold it off till i at least fail physiotherapy.
  • so nothing’s sure yet?: hasn’t it always been?
  • medications?: we are exchanging celecoxib(Celebrex) for etorixcoxib(Arcoxia) since she thinks it might work. i’m giving her the benefit of doubt, but generally not believing it. one NSAID for another?
  • anything else?: she recommended PT of course, then also accupuncture. she wasn’t listening about the “can’t do PT while still in pain” thingy so i really don’t know. aargh.
  • can you be managed by an orthopaedic surgeon?: i did ask her, and said that if she thinks it really isn’t a RA thing i will let ortho handle it. but she said she’ll still be seeing me nevertheless for my RA, and managing my flares and all. so she’ll do her best with the pain. she however held back with the ortho referral, saying that it is not warranted until a MRI is needed. (my guess is such imaging is left for the ortho doctors to figure out, nevermind the report.)

i told her about the triamcinolone shot i’ve had, and she does agree that by now it should’ve kicked in. i cannot be injected again until 2-3 months later. and i’ve confirmed that if the tendinitis is indeed chronic/mechanic, and not a flare of RA, then my ESR especially will not be elevated.

i remarked with a sigh that it’s gonna be a ‘wait-and-see’ game, and she disagreed because she says there’s PT! yay!. why of course! when you’ve not lived a life chasing for something like being pain-free, or for the next rheumy appointment because your flares won’t go away, or when you start a new medication and it takes 2-3 months to kick and till then you’re ‘dying’. you cannot appreciate what it feels like to keep waiting for plain normalcy. my appointment with the PT is in 3 weeks? is that too long? yes it is. honestly. what will i do with my pain till then? and can i actually do PT with pain? sigh,

i managed to ask my rheumy for prednisolone to manage huge flares during in-between appointments. SCORE. i haven’t taken pred for years, and although i hate what it did to me on long-term basis, i recognise its value in managing flares. i know i go crazy when i have major flares. it affects my mood and it’s a rather vicious cycle to be in.

i had my bloods done today. i am praying that my transaminases are normal. my liver is important to me as much as MTX is. i haven’t felt MTX kicked in yet, so praying that my liver can hold out for as long as possible. it’s like i wanna have my cake and eat it too. abit of bargaining and abit of being greedy here. that’s just part of me wanting to cope from the reality that transaminitis is very possible, but that i’m willing to risk it because at least there’s some chance of some halting of the disease. (the other was SSZ but we were trying to reduce pill burden.)

i walked out of the room today still looking for answers, albeit a little lesser after seeing her. some of the same questions still linger. my fears are still there, and seeing that my left shoulder is also problematic (i’ve made sure it is known to the doctors), it is a matter of time before i have to face the same issue with it as well.

whatever has happened, i still thank God for providing. things could have turned out otherwise and everything pointed to that, but it didn’t. i was taught that in anything and everything, i have to remember that i am living in God’s time. so yes, i am waiting. it may feel forever, but that’s because i’m counting in the world’s time. living in God’s time, i have to be patient and lean on God and trust that in His time and will, He will provide and heal. i have to learn.

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