In my last post I mentioned that I had been through the wringer medically these last few weeks and spent a fair amount of my time in the Emergency Room at the Fairview Hospital (here in MN). Yesterday I found myself back one last time and I am still feeling so….off about the whole thing that I need to write about it.
The first adventure to the emergency room was on a Wednesday at about 8:00pm. When we left the house I had been crying for two days I was hurting so much and finally decided it was worth it to try to get seen. Even if they didn’t do anything for me. (We talked about this in Even I Didn’t Believe Me)
I saw Dr. A in the emergency department (versus Urgent Care) and he did not require an IV or any kind of blood work. He did order an Ultrasound (u/s) to look in my pelvis with minimal invasiveness and he offered me an anti-psychotic in clinic for pain control. I had never heard of the medication before so I asked about the side effects and how the medication worked- which the nurse had to look up- and decided against it. To my slight amusement the nurse herself said “I wouldn’t take this either.” and disposed of it.
It seemed like once there was a tangible reason for my discomfort (the complex cyst had been discovered) it was okay to treat me with a bit of a softer hand. Dr. A was alerted by the nurse that I declined the anti-psychotic and at that point offered me something orally for the pain. The conversation went something like this:
Dr. A: How are you doing pain wise?
Me: It’s uncomfortable, I would say about a 7 on the pain scale for me.
Dr. A: Would you like something for pain?
Me: Umm, Yes that would be great.
Dr. A: What would you like? *Now this feels like a trick questions because if I request a medication by name I’m a seeker, if I don’t ask for what I know works I could end up worse off.*
Me: I guess I’m not sure what to ask for? I’ve not been offered medication like that before.
Dr. A: Well what do you usually take? I can give you that.
So we decided on one Percocet 5mg tablet while I was in the ER, but he was not willing to send anything home with me. The rest of this story is in Even I Didn’t Believe Me.
The second adventure to the emergency room was after I was in a car accident with my friend, again, on a Wednesday afternoon. I was treated in the Urgent Care section for this injury by Dr. C. He was quick and kind and immediately told me that he was sure I was in pain (makes sense, I was just in a car accident). We did x-rays and discovered a mild reversal in the curve of my spine due to the whiplash from being rear-ended. He prescribed rest, ice, anti-nausea medication and he gave me medication for pain to take home with me.
My third round through the emergency room I was back in for right side pain and nausea (I thought for sure it was my appendix this time) I was immediately put in a wheelchair in the waiting room, and an IV was started right after I got into a room. He did a full blood workup and we did an ultrasound and a CT Scan of my abdomen. They found yet another complex cyst, and a cyst on my liver but my appendix was/is still perfect. He was extremely thorough and he offered to provide pain medication to take home. I thought he would give me a couple but he actually gave be a fair amount. After several years of ER visits and never being offered anything at all for pain, I was starting to see how the non-chronic pain patients lived. (More on this in a coming post)
The next day the ER Lab nurse called to tell me my UA had grown a bacteria overnight so they wanted to treat me for a UTI. I wasn’t symptomatic but she said that this bacteria always becomes an infection so she sent in a prescription for Macrobid (the antibiotic from hell) and I was on my way to healing up.
Friday night I started to have some bladder pain, Saturday during the day it got worse and Saturday night I was up six times to go to the bathroom with all the fun a UTI brings. To make things more fun my newest cyst friend had started the process of rupturing. I called the ER Lab nurse on Sunday to see about repeating an antibiotic course and she was sure that the doctors would want to see me in person and asked that I come in.
It was so beautiful here in MN yesterday; balmy and almost 70 degrees. I wanted to be anywhere but sitting in an ER waiting room but she was insistent that I could have a kidney infection and so The Hubs and I packed up to trek back to the ER again. We waited for over two hours in the waiting room while we were there. I was so dehydrated and freezing by the time I was called that they blew out three of my veins trying to place the IV and draw blood for labs. Which, of course, is not their fault but I was so miserable I cried after the first one which made everything worse.
I could feel it, that feeling of wanting to give up. That feeling of spending too much time as a lab rat and not enough time as a human. I told The Hubs after a grueling 5 minutes blood draw from a wasted vein that I just wanted to go home. The Lab Nurse was so concerned on the phone though, so we stayed. It was another hour before I got in to see the doctor. With all the repeat business they were getting from me I shouldn’t have been surprised that I had circled back to Dr. A.
He was standoff-ish as soon as he entered the room with a look on his face that said “why are you here again?” which immediately made me nervous. He did not order any imaging, or even ask what my symptoms were. In fact, He never even laid a hand on me. He repeated a few times that I had just been in five days ago and that my labs were fine. I agreed that my labs would be negative since I was still actively on an antibiotic but reiterated that the ER lab nurse had insisted that I come in.
He said it was “odd and uncommon” that I would be symptomatic with UTI symptoms at the end of the treatment in a way that made me feel like he thought I was lying about my symptoms. He focused in on the complex cyst from the previous encounter and said that showing up in the ER to treat the symptoms of a complex cyst rupture was inappropriate and asked me what my plan was moving forward to deal with them.
I shared my plan with Dr. A (even though I’m not sure how that applied to the real reason for my visit) and he advised that that plan was “inappropriate” and that he was going to email my OB/GYN and tell him that his plan was inappropriate.
Dr. A also chastised Dr. D’s treatment of me from the last ER encounter and the fact that he sent me home with medication for pain. Dr. A expressed his distaste for long term use of opiates as a whole but then backtracked with the statement of “But if that’s what you and your team decide is best for you than that’s okay”. He then pivoted back to the clean labs and the fact that I shouldn’t have symptoms of a UTI at this point and then without ever having laid a hand on me he discharged me over four and a half hours after I went in.
It was uncomfortable and he made me feel so, so bad about who I was and I was there, which was such a switch from the previous three encounters. I addressed the uncanny timing of it all myself and admitted I was concerned about the perception of my behavior. As a chronic pain patient I am well versed in the ways doctors decide you’re drug seeking rather than treatment seeking and even in my mind this was borderline too much.
But it was a Sunday afternoon, and the nurse herself had been so kind and so insistent that I return that I did; against my gut instinct that it would go poorly and goodness did it ever. We got home about 7:00 pm and had dinner with the kids and I went to the comforting arms of my bed with The Hubs right there to snuggle on. I wanted to hide there forever I felt so icky about myself.
How is it possible that in the same ER doctors can treat you so differently? What was it about me that Dr. A found so offensive while Doctor C. and Doctor D. were welcoming and open and helpful? What’s more is that I don’t think Dr. A even realizes the effect he had on me and that I am still carrying around these disgusting feelings about myself.
And what does it even mean to say that I “shouldn’t have symptoms” at any point in anything. If a patient is reporting any kind of symptom, then that’s the symptom they are having; regardless of whether not they “should”. Dr. A saying it isn’t common or unlikely doesn’t make it any less real for me, and even more frustrating is that this isn’t an unheard of experience. I’m hardly the first patient to develop an infection while on an antibiotic. Medicine is a practice not a perfected science.
The idea that if a patient doesn’t fit into a perfect diagnostic box they must be wrong is completely ridiculous and undermines the process of growth in the medical community. If we don’t start accepting that not every condition is going to check every single box along the way far too many patients are going to go undiagnosed and undertreated for way too long.
Books and studies and educations are wonderful stepping stones to treating patients, but patients are human beings not medical school exams. You can’t get 100% on a patient every time and I’m tired of having to jump through all of these hoops and present in exactly the desired way by a provider to be treated the way I deserve to be treated. Just when I thought it was going to be safe to visit the ER when I needed urgent care, I was reminded exactly why I can’t. At least, one out of three times anyway.