I think almost everyone who has been diagnosed with a chronic illness has at least one horrifying story of how something has gone majorly wrong. If we spend that much time getting complex medical care is it statistically inevitable that something is bound to go wrong at some point? I hope not, but with diseases that require a lot of juggling and refuse to follow a standard pattern…. That being said, many of our experiences, like mine, can be chalked up to nothing more than negligence or disrespect for patients.
When I first became ill, my lupus completely failed to present like a textbook case. This is a common occurrence, which is why so many people are not diagnosed for years on end. In any case, one day I found myself so intensely dizzy that I couldn’t stand up on my own without tipping over. My mom freaked out when this wouldn’t stop, and as it was after hours by then, rushed me off to the Emergency Room.
We waited for hours to be seen, but were eventually led back to a room. A doctor came in and asked a few perfunctory questions. Then she said she needed to do a lumbar puncture to see if the spinal fluid could give us any answers. I thought she’d tell us to go see someone in the clinic the next day, but she said that she didn’t want us to wait that long so she would do the procedure herself – immediately.
I don’t know if you’ve ever had a lumbar puncture before. I was told to basically curl up into a fetal position. The first step was to numb my skin. Then more anesthetic was injected along the path that the needle would go. As that anesthetic went in, I informed them that my skin hadn’t numbed since I could feel that needle. I was told that sometimes it takes awhile for the numbness to set in. I had to wait a bit for the numbing agent to work, and then the doctor came in to do the procedure.
That anesthetic didn’t do a damned thing. I felt that huge needle boring into my spine.
It hurt. Like hell. A needle going into the spine is a completely indescribable feeling. As I write this, I can still feel that needle going in and I’ve gotten all squirmy. I’ll never forget that feeling as long as I live. The doctor just told me shush and that I couldn’t actually feel it. Apparently, I was just scared and so I thought I could feel it. Right. I was awfully tired of this “it’s in your head” sentiment as I heard it often in the days leading up to my diagnosis. I told her very firmly this was not the case, and that I really could feel the needle going in. She told my mom that was I was just scared. She asked my mom to hold me still and quiet me down so the doctor could focus on the procedure.
Now, I am a strange person who can’t scream on command. I’ve never been able to scream on command, and as far as I know I have never before or after screamed at all. Oh but at that moment I was screaming bloody murder. To be fair, it kind of felt like I really was being murdered. Another doctor came rushing into the room to see what was happening. I managed to tell him in between sobs and whimpers. It was not pretty.
It turned out that the doctor who had been treating me was a resident. The new doctor, who turned out the be an attending, had me checked into the hospital to do the puncture the next day.
When I was checked in, I told the attending on that floor that I didn’t want that resident anywhere near my room. She worked in the ER, so there wasn’t really any reason why she should be treating me once I was checked in but I wasn’t taking any chances. I guess this attending (and perhaps the one in the ER) must have logged my complaint somewhere. The resident showed up the next day absolutely livid. She informed me, in a tone that belied her words, how sorry she was that the procedure had not gone well. The anesthetic had been given properly, so she wasn’t to blame. However, it was a hard procedure, and I shouldn’t have made such a fuss, because now she was in big trouble. Didn’t I know that a student has to learn?
I informed her that learning to do something on a patient shouldn’t mean torturing the patient. Moreover, if she wants to learn to treat patients, she ought to learn the basics first: listen to your patient, damnit! She should have listened to me when I told her that I could feel it, instead of just shushing me. My complaint wasn’t about how she did the procedure, it was that she had no respect for me as a patient. She ought to learn that first. I didn’t mince words. She flounced out of the room in a huff. Sometimes I wonder whether she ever got anything out of that experience or she just wrote me off as a horrid patient that got her in trouble for no good reason. One can only hope..
In any case, they finally did the procedure under general anesthesia, because there was no way in hell that I was going to allow that procedure to be done while awake. Ever again.
After all that, the results from the spinal fluid came back negative. Figures.