perhaps it’s time to switch

yesterday at work, i received a call from my rheumy. she had seen my email. i excused myself to speak to her as there wasn’t any patients, so i walked out of my clinic, and hid in a corner while i talked with her.

she saw my OGD results. and what she said wasn’t what i wanted to hear. well, she doesn’t always say things that i want to hear. so… despite normal scope results, she is unwilling to treat my RA aggressively with DMARDs like we’ve done so previously. she finally threw the words at me “you’re clinically in remission” at me, and at that point my eyes swelled with tears. i was insulted. or perhaps, my body was. i rebuked “yes perhaps clinically i am in remission, and i know how it is clinically defined. but as far as i know as a RA patient, i have never been in a remission”. she didn’t say anything to refute that.

she said there was an issue with polypharmacy. she wanted to minimise the number of ‘unnecessary’ drugs, and consequently the side effects, since my RA is “not active”. she also mentioned that she spoke to my psychiatrist that they needed to manage the psychosomatic component of my symptoms. perhaps i heard her wrong, but she was insinuating that it was a lot more in my head than it is in my joints. she reassured me that she believes me when i say that i am in pain. but being terribly disillusioned, i felt patronised.

if she believes me, she wouldn’t be doing this, and i wouldn’t still be silently fighting with her all these years to get into a state worthy of me calling it a remission.

i told her as i sobbed, that she only looks at my inflammatory markers once in 3-4 months. she examines my joints once in 3-4 months. that’s only 1 day out of the possible 90-120 days. how does it quantify my disease activity or my quality of life? i was crying talking to her when my colleague came out to call me in as my patient had come. i think she must have seen my tears. but i told her to give me a while more, and i continued to speak to my rheumy.

in her desperation, or maybe exasperation, she gave me the green light for NSAIDs ONLY. she kept telling me that she understands, that she knows what i’m going through. but she doesn’t. i’ve seen how doctors work from a nurse’s perspective. i’m a patient myself. i know it personally when a healthcare professional tells me he/she understands. she doesn’t. not only does she not understand, she disapproves. she goes on further  to say “let’s not give up”, and at that point i was like a grenade ready to explode. it has never been a “let’s” thing. i was always alone and there was never any support. i could never get her when i needed help with flares or side effects. there wasn’t a rheumatology nurse. it was always me trying to fight for better treatment but always coming out of the consultation room disappointed knowing that the coming 3-4 months will be painful. again.

in the conversation there were so many silent pauses, because she didn’t know what to say while i waited to hear how she was going to respond. i ended the call patronising her in turn. wiped my tears, blew my nose, and went back to work like nothing happened. i had to greet my patient with a smile and apologise profusely for making him wait. it wouldn’t be fair to him and professional of me if i brought the aftermath of the conversation back into the clinic.

i cried so much after work and at home. this morning too. i cried because despite me giving endless chances to my rheumy to prove herself to be a good one, she may not be the good one i’d like to have. or the one who is able to help me. i cried because in giving her chances it was a disservice to myself, letting myself flare endlessly and writhe in pain. i cried because this someone who saw me grow through my late adolescence into my adulthood, who i respect and love very much, turned out to be the exact antithesis of doctoring.

maybe she forgot that RA came first. maybe she forgot that the lack of control in my symptoms of RA is feeding into my depression. maybe she forgot too that it is because of the invisible progression of my disease that i gave up one of my life lines which is ballet, and greatly affected the other, which is nursing. those had already rocked the boat, especially with the lack of any support. and maybe she forgot she had let herself be blinded and biased when i fell into severe depression and wasn’t the girl she used to know anymore. i became the girl who was doing things she was disapproving of. and then from then on, the fight changed.

i remember well when i first told her that my hips hurt. she told me the hips are usually not affected in RA, and brushed me off. but the synovitis in my hips was the last straw that made me pull out of my ballet exam and then finally retire from ballet. am i not aware of RA joint involvement? yes the hips are more relevant in OA. but as a patient i told her that and it was dismissed. what was i to do?

i am fully aware that my rheumy was trained in USA and is very in touch with ACR guidelines. i do not question her professionalism. and as a patient who am i to question her knowledge? i empower myself and i am my own advocate. i ask questions and I make suggestions. sometimes she takes them, sometimes not.

but now, it has gone to the point of total irrationality. RA. without DMARDs. only NSAIDs. with a poor history of response even with triple DMARDs plus a NSAID in the past. currently with a new diagnosis of fibromyalgia.

i don’t know what to do.

3 thoughts on “perhaps it’s time to switch

  1. Find a pain mgmt specialist, be patient with them. Try
    Lidocaine patches, especially at work. I cannot take steroids so I am narcotic needy. I hate being told how I feel. I had to leave the ICU and take a desk job, that hurts too because I type all day and open charts etc. I have no pt contact, so be grateful you still help others. I never danced ballet, but I gardened, drank, swam walked 40 miles a week with my dog. Now food shopping I need a helper. It sucks. The drugs they are so afraid of, narcotics, are the far safer than upping the dosage of prednisone, now at 15 mgs day. I like you am thin, and I’m short and was never strong. I worked somewhere that expected nurses to do all the lifting turning and moving…and god forbid there is a decub! It was your fault!
    I wish it was easier for you, that you had a career before a diagnosis like I did. You are still helping others, find better MDs for you, especially pain mgmt, they have saved my sanity. Everyone wants me to start meds that made me so loopy in the morning I forgot what I heard in report and screwed up, mildly, then I was drug seeking… Really, I thought I was trying not to hurt my patients! I cut pain meds in half, take them on an empty stomach…they work better and faster . It is a crappy diagnosis, we deserve better. If one more person tells me to get SSD, I will scream. It cuts my income in half, I still have kids at home, I am divorced…men hate women who actually need them. I put him thru Resp and nursing school and stood by during the navy years. Five kids, one with autism one ADHD, life is hard. Now in a job where I could be fired for thinking too much like a nurse. So think and plan…in my 36 years of nursing, I am not alone in how we are being treated as we age in nursing. Dream big, maybe caring for ballet dancers will bring to nearer to what you love may help. But honestly rheum MDs are afraidy cats when it comes to pain meds and shots. Next you will have problems getting narcotic from the drug store, they somehow think we are addicts who work and plan lives, ridiculous . I worked in the inner city and honestly they treat heroin addicts nicer than RA patients.

  2. Pingback: detaching from rheumy | bloom where you are planted

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