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Upset about invalidation
Sat, 03/30/2019 - 11:45I live in an assisted living facility and lately I've had many seizures in the past week well in the past month and a half, really, because the nurses kept messing up my meds and then I got sick with the stomach flu and then got sick with an Upper Resp. Infection. So it hasn't been the best of months. Anyway, I ended up having some back to back seizures and went to the ER, where they gave me a Keppra drip, per my Neuro's orders. My neuro decided to up my Keppra med from 750 mg bid to 1000 mg bid. Well, when I asked the nurses the next day about implementing the next dose, I was told they were working on it, ok so I went on with my day. I ended up having two seizures back to back. During the second seizure, I was being evaluated by the ambulance emt's and when I came out of it and was postictal, the CNA who was with me asked one of the EMTs (as if I was not there, an annoying thing they tend to do) if that was really a seizure and the EMT said no. I have had epilepsy since infancy and have the diagnosis, take two meds for it, etc... so this was news to me even though I had lost consciousness during it, so I have no idea really, but I'm guessing I had a seizure. It kinda made me angry a bit, for one, because they were talking like I wasn't there, and because who the heck did they think they were - did they seriously think they knew as much or more than my Neuro? So they load me up in the ambulance (after convincing me to go, which I hadn't wanted to in the first place), and I finally told the Emt that I heard their conversation and was confused that, if she felt I truly hadn't had a seizure, then why was I going to the hospital? She had no answer for me and she basically ignored me the rest of the way. After that any communication she gave was "possible seizure". I still don't get it though. I am going to talk to the big boss here at the facility because I don't feel they had any right to discuss that or "diagnose" my seizures. I mean, I know this CNA and she is going to run around and tell all the CNA's and nurses that my seizures aren't real. My worry is that they will ignore me now and not treat me when I have them. That could be dangerous for me. Am I being ultra paranoid?
You are at risk because
Submitted by Patriotrehab on Mon, 2019-08-26 - 21:42
You are at risk because people who are unqualified to diagnose are making a diagnosis and creating a reputation for you among those are responsible for your ultimate care. The trouble is that even doctors are wrong sometimes about whether a seizure is a seizure. I’m going through something similar now, trying to gather all kinds of documentation because this new doctor is adding 1+1 and making 6. You are dealing with their unconscious conflicts and they are projecting it on you as if you have some sort of “psychological” issue. I am in no position to diagnose whether your seizures were epilepsy or PNES or fictitious in nature, but I am a licensed clinical social worker with a lot of experience in understanding human behavior and the unconscious and from my perspective...it seems to me that the CNA and EMT had their own unconscious conflicts that motivated them to doubt you.