i’m at the end of my line.
i am literally dangling at the edge of a building. and i know people will call me out for being melodramatic, including my doctors. but really, this is where i have to say, i feel like i am being trashed head-on with first my body (RA and FM), and my mind. and in the midst of it all, i feel nothing but helpless.
in the past 2-3 weeks… i see myself running away, wanting to leave the place i call home behind, refusing to face my family face-on. i see the knives in my heart from the words of friends and colleagues, and still i refuse to stem the bleeding. i see myself driven to desperation with an age-old problem, and getting angry at the situation where no one wants to help when i’ve finally let my guard down, and then crying because it has been all too futile. when i should know, that all my life, everything has been futile. i’ve cried too much these few weeks. at home, at work, during consults, on the buses and trains. i can’t seem to hold them back; everything seems too much to bear.
it is at this point where i am honestly, trying everything that i can possibly do, to keep myself sane and functional. and then for the rest, leaving it up to the doctors, if they can, when they can.
my psychiatrist seems to see me as being threading on thin ice right now. and that’s why for the 2nd week in a row again, he readily gives me medical leave from work. i didn’t utilise it last week. this week i am using it though. work has been cruel, and my body is rebelling from doing a lot of cradle nursing. he appreciates my efforts, no matter how they can be dysfunctional sometimes, to cope. because it hasn’t been easy to keep myself safe and my body from bleeding. and perhaps it is because of his empathy that i expect most else to be like that.
and that’s how, being helpless and leaving it to the doctors, i got slapped in my face that nobody really gives a damn about my struggles. it was the cold, harsh reality again (although i have always known it) that a patient can do everything she can, but when her doctor wants to be a dick, what can she really do?
NOTHING. except to yell in their face as politely as i can.
my mind is in a dizzy frenzy since finding out that i have rotator cuff tendinitis. i have many questions, and i think that some of these questions don’t have answers. and how i’m at the end of my line precisely because the triamcinolone injection into my shoulder yesterday doesn’t seem to be work its best. i’m still in pain. i feel fucked up for just wanting to go into surgery already.
- if RA is the culprit causing my rotator cuff tendinitis, why is it not responding to anti-inflammatories, and very little to steroid injections?
- if this is my 10th year experiencing the same shoulder pain/involvement, does that mean that my rotator cuff has always been affected?
- is there anything else in my shoulder that is pathologic? synovitis? bone spurs? hooked acromion? is an MRI really inevitable? or can i just do an x-ray?
- can i skip the physiotherapy and just do surgery already? this shoulder has been hurting for 10 years, i’ve never really gotten a remission even from it, it has gotten progressively worse not only just this year but already insidiously in the past 2-4 years. and if i cannot be pain-free now to do physiotherapy because i am not responding to medications nor the injection, how else?
- if my request for surgery is rejected, how will i be managed medically? looking at how i’ve been managed by my rheumy for the last 7 years with almost every visit with complaints of shoulder pains and it being ignored… and also looking at how i was managed when i presented myself to the Emergency Room and subsequently the Acute Pain Service. if i am managed medically and the pain persists, can you reconsider your option of denying me surgery?
personally i’m one who needs a lot of control. i want to know as much as i can, especially with a body that i am living in that hasn’t been very functional. i want to be able to have a choice to say that if i disagree with a doctor and his opinions, i will go to another. and i want to be able to look and look until i find someone who is in tune with the goals i have for my body. it upsets me when suddenly i am thrown something that i could have known 8-10 years ago, but because i’ve been repeatedly dismissed it has not been discovered. and although something was done in 2011, something unrelated was found; ultrasounds can be very operator-dependent. i continued to be dismissed until last year that i was given steroid injections, which helped tremendously. but for the length of time it helped, i was told it was too short that it lasted. too fucking short.
i don’t know if i’m angry with myself, or if i’m angry with my rheumy for this. it’s easy for her to dismiss me- i even wonder if she ever documents all my complaints of shoulder pain at almost every visit i see her. but i don’t know if she ever knows how it feels for me, having to put up with the pain, trying to look for answers amidst all the chaos within it, and then blaming myself anyway for being “weak” and not “strong enough”.
all these questions i’ve written, i’m putting it across to her, although she is no orthopaedic surgeon. i need her to answer them with as much honesty as she can. and i need her to make suggestions for solutions and for referrals. i need to know that when it comes to such a point, she knows how to handle me and my disease. and if she doesn’t know how to, i really need to look for another rheumatologist to move on to. with her disappointments have neen aplenty, triumphs too few to mention.
for now i still need to grit my teeth and bear with the pain. i’m moving it much less, and if i can i don’t raise my arm at all.