Hi all. As some of you know i.ve been o benepali injections since june .was having a real bad time ..so at first i thought it was doing some good .swelling went down .but 3 weeks after everything swelled again only worse .ankles feet.wrists even my face ??.so the first time i saw my rhuemy nurse was last week .
She said you don.t look too bad .the injection may be doing good but you just don.t think it is .
I said the fatique and aching everywhere is worse.
She said well the doctor may well just stop the injection.
I said well .she will obviously put me on something else .she said well i doubt it .
How can someone in her capacity as a nurse be so unfeeling .when the patient in front of her is tired and in pain .go to physio she said ??
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keeta
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It’s terrible that a nurse in her position would act so cold and uncaring. I think sometimes the problem is that they have a hard time understanding how awful we feel when we look so darn good. Meaning we look healthy. I know that sometimes that happens to me from my own family and friends. They always comment on how good I look, and I have to tell them that I wish I felt that good on the inside. People just don’t understand how painful and tiring this can be. I wish they could just walk a mile in our shoes. I’m sure after a few steps, they would understand. Good luck.
I had a horrible experience with one of the nurses a few years back. She got really stroppy with me because I refused Methotrexate. She said, “if I had RA I would be knocking the door down for Methotrexate”. I am afraid I was just not in the mood for somebody with her attitude and she got told on no uncertain terms what she could do with her Methotrexate. At the end of the day it’s your body and you should have the right to say what goes in it. I talked it over with my rheumy and she was very understanding and we agreed on a different medication. No need at all for any nastiness when people are suffering.
Sorry this has happened to you. This is another terrible rheumy nurse story and seems to be getting more common. If they are rheumy nurses and talking to patients with an incurable disease like this then they should be ashamed of themselves.
I think specialist nurses get paid more for being more qualified and knowledgable.
Who is empowering them to speak to RD patients like this? Have you the energy to make a complaint through PALS?
Thank you lovely .i know all nurses are not the same .my own daughter is sn odp and she has so much empathy for others.which is why i excpect so much more. I felt so ill on that day .and did not excpect the retort .
Bless you for your reply it makes me feel i.m not being daft xx
I would tell your rheumy, Keeta, you don't want to see that nurse again. It's stressful enough going for the appointment. Sorry she said what she did and she can't speak for the rheumy and her plans for your treatment. I had to do this with an older experienced nurse who should have known much better and was due to retire and was very cranky. She phoned me up and called me a liar as she couldn't find my blood tests and said I had never been! I was due to get married in two weeks and my partner had had a serious op so I told her that I had a lot on my mind and I didn't want to speak to her or see her again and that I would have to tell my rheumy. My rheumy was very upset. My current main rheumy nurse is wonderful, and sensitive. She's a gem. No one should scare a patient or upset them. There is another nurse who is obsessed with telling me how much younger she looks then me ?? Or more tanned?? Err she looks much older actually but why should she be making silly comments? I hope you can see your rheumy soon. Did you change from Enbrel to Benepali? Is it possible to be in touch with your rheumy via her secretary/PA. Good luck.
Thank you love .i will tell heron my next visit . No i was just on sulphazalazine .still am . I was told i was going on embrel but then i got benepali.
Your nurse sounds a horror .the app is about you not her .
Compassion fatigue is rife amongst nurses and perhaps we shouldn't be surprised given the state of the NHS and the pressures of working within it, also the lack of supervision or emotional support for health professionals BUT ... there is no excuse for the experiences shared here. However tough we are, we can feel really vulnerable at clinic appointments and upset by callous treatment.
I have been left speechless when nurses have been tactless or downright rude - and I'm not stuck for words very often!! It's in all our interests to report poor treatment to the Rheumatologist, their Secretary or PALS and doing so might even show the nurse concerned that they need to take a serious look at their lack of professionalism. We're unwell not stupid and shouldn't be targets for bullies!
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