I just saw my rheumy today. I don’t know what i was expecting from today’s follow-up. I try to manage my expectations with anything and everything i do. But perhaps in my enthusiasm, i forgot about that.
My rheumy was good, like she has always been. Kind words, concern, sensitivity and all. It was heartening, and i was glad. But when i walked out of the room, i was disappointed. Not at her. Rather, i was upset at my control of the disease, and how i’ve hit the wall. My bloods were good- Hb at about 10 and near normal levels, ESR at about 37. My CRP is within good range. And with all of that, i seem to be quite ok. That despite having flares and an elevated ESR. There is nothing changed in my treatment except that i am trying Celebrex(celecoxib) since Arcoxia has ended its run for me.
I won’t go into great detail, but although i have already accepted the fact that i may never go into a remission, there was a chance today for me to start on biologics. Thinking about it, i was actually excited that remission was possible! But guess what??? It’s not working out AGAIN.
Shit happens. Always.
Obviously nobody can see how futile this is getting, except for me.
A patient service associate wanted to weigh me today. I found it odd, because my rheumy never ever weighs me, especially not when i ain’t even taking biologics. I absolutely detest those weighing scales im hospitals. I hate them with a vengeance even. Because they will always weigh in excess of 2kg, and you are suddenly 2cm shorter. (No kidding ok! Tried and tested myself in several hospitals!!!) So i tried asking if i can refuse. The answer was a condescending no, and a challenge even. Fuming, i kicked off my Fitflops, threw my bag on the floor as well as my handphone, and got myself weighed. I was ready to fly into the rage seeing my height and weight. Storming off, i rolled my eyes at the PSA, and many times after to show my displeasure without kicking up a fuss. (I won’t even go into why it makes me so mad being weighed. Ask me privately if you want, but that doesn’t belong to this blog.)
It seems like i am a fussy patient, wanting things my way, and being excessively difficult. Perhaps i am. Despite that, i always insist that i treat others with respect. But i have my rights as a patient and as a fellow human, and i really don’t see why even as a patient, i am being treated with such disregard. Once or twice is fine, but it happens repititively, excessively even… I don’t think i can tolerate such nonsense.
That’s the difficulty sometimes, when you have been a patient (inpatient or outpatient) for a while. The very system which is helping you, becomes the system which you have to fight against just to stay sane.