What happens when you go to an ER? You expect to be taken care of. Same thing goes for when you visit a doctor. The profession is about helping people, after all…isn’t it?
I blogged before that on October 6, I had to be admitted into Stanford ER. It was my third emergency room visit…of the week. Because I was gasping for air at the time, all the attendants around were freaking out. I wrote that blood tests were immediately done. It turns out that I was mistaken.
Today, as we were trying to collect all my medical records for my upcoming appointment on the 21st with Stanford’s Neurology department, the truth came out. My blood tests weren’t available for me…because they had never been processed. According the ER nurse, the “primary neurologist” (which I assume to be Dr. Sun, since he’s been the only official neurologist I’ve had so far, and is the same doctor who lied to me about Lexapro being a muscle relaxant, refused to refer me to psychologists and psychiatrists even though he would prescribe me the medication, and falsified a part of my medical records) said that new labs were unnecessary, that I already had the basics done, and they were “normal”. Since it’s Veteran’s Day, I haven’t been able to contact Dr. Sun and verify this story. It may or may not be true. In either case, nobody ever thought it would be pertinent to mention to my mother or me that no labs had been run. Everybody (my ER doctor and nurses) kept insisting that the tests were normal, and that I was fine. My question now is: what tests? And fine based on what, exactly? And even if previous tests had been run, the fact that I ended up in the ER should’ve been an indication to do more, to see what was wrong with me then. And what were we billed for, if no actual lab tests were conducted?
These are basic protocols. SIMPLE things that should have been done. Over a month has passed since then. I’ve been on four different medications, so obviously, my body has been chemically altered by now. The tests that will be done now, that were supposed to have been done before, may or may not detect what’s wrong with me. We will have to hope.
But I’ve lost time. Days where I lost the capability to use my hands or walk and days where I had difficulty breathing, all in addition to spasming. Days where I had to keep missing school and fight to keep from giving in to misery. I haven’t been working either. And this could’ve all been prevented. It might’ve all been over a long time ago, had somebody just done his/her job properly. Sure, that might’ve not been the case, but the chances are a lot more likely that I’m not a medical mystery, that I haven’t been all along, but simply a mistreated patient.
So yes, I am angry. More so than I have ever been in my entire life, that it caused me to shake from the rage, to scream in the shower, and to bawl from the memories of all that’s happened since October third. The Stanford ER doctor actually told me at the time not to go back if I started spasming again. “We can’t really help you with that, and [it] sounds like your neurologist is doing all the right things,” he observed. My mother indignantly explained that I was there because I couldn’t breathe, and he backtracked. “Oh. Well yeah, if you’re not breathing, I’m not going to tell you not to come back…”
It was a lie, though. They could’ve helped me more. And, for some reason or another, a reason that will never be good enough in my eyes, because who are they to decide that my life wasn’t worth a little extra effort, they chose not to.
There is some good which came out of this, however. I am more determined than ever to get well and live well. I am still here, and now I feel the need, more than ever, to make it count. Also, this weekend, I did travel down to LA for an unofficial consultation with the neurologist father of a friend’s friend (since no one else could officially fit me in before the 21st). He asked me if Dr. Sun was “a real neurologist” and was so appalled with the care I’d been receiving that he gave me a new prescription, which I’ve been on for two days, and seems actually to be working, unlike all the others (as prescribed by Dr. Sun and/or the ER). So I seem to finally be on the path towards recovery.
Also, I’ve learned the lesson that you cannot simply take people at their word. When it comes to medical matters, always ask for copies of the records, if not the originals themselves.
This has been a most difficult time, and it’s not over yet. At best, there’s been negligence. At worst, it’s a malpractice case in the making. But the focus for now is still to get better. I’ve weathered everything so far, and now have a new will to power through everything and anything else that comes. This will not break me. I won’t allow it to.
Tagged: health, myoclonus
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Un-freaking-believable.
I’m mad just reading about it and I haven’t been through any of it. I’m glad you’re seeing the silver lining in all of this and totally agree, but I also feel people in such position really need to be reprimanded. They have a responsibility to uphold.
btw, i love your comment timestamps.
I am truly sorry about what you are going through. I hope you get some answers soon.
Agree with Kevin absolutely. Reading your Twitters just made me angry about how completely incompetent and negligent your doctors were. I know your priority is to get your health going, but damn, if there’s ever an opportunity to sue the pants of these guys, this would be it. That’s the thing that gets me: SURELY they know they can be sued out of their profession here, and they STILL treated you like that. It’s enough to get the blood boiling.
Glad to see you’re finally on what seems to be the right medication though, and that you’re on your way to recovery. Stick it to them!
PS. Also, I love that Kevin couldn’t resist a design comment. Hee.
Elea, I mean this in all seriousness even though it will sound cheesy – YOU ARE AN INSPIRATION AND I ADMIRE YOU.
I want to punch that “neurologist” in the face – what a jerk. I think it’s a testament to your good nature that you have not yet strangled him.
I am still rooting for you over here. Crossing fingers about the blood tests and all that.
Absolutely ridiculous how your case has been mishandled in so many ways. I’m glad Dr. Park was available to meet with you, and I hope that your upcoming Stanford neuro appointment goes better than the last. How many bad doctors are you going to come across before you can find someone competent… :: le sigh :: The damage has been done, and methinks everyone will proceed more cautiously from now on. Much love!!!
How appalling and absolutely infuriating! I am so glad that you are in good hands now. I wish you a speedy recovery!
God, that has to be grounds for a malpractice suit. I would suggest seriously following through on the falsified medical records – that doctor NEEDS to be reprimanded, suspended or otherwise seriously penalized for … I mean seriously?? Lying on a patient’s medical records?!
You will get well. It may take an inconveniently long amount of time (and has so far), but you will get better, because I refuse to consider the alternative.
Be strong, lovely, and use that anger properly – channel it back!
Glad you’re on the road to recovery. Take care of yourself.
V xx
Well, I’m glad you’re clearly getting better enough to properly feel angry. I’ll do anything I can to help.
Grrrr, this boils my blood! Don’t let them get away with this, Elea! Take care of yourself, yes, but also this guy should not be able to get away with this. I know this has to be illegal on so many levels.
I’d be so pissed. Ugh, I can’t believe they’d do that. Seriously, there must be some way to file some sort of complaint. I mean, it’s one thing for him to say, “I don’t know. I don’t know what’s wrong.” It’s completely different for him to lie about it or be arrogant while putting the blame and responsibility on someone else. I understand we’re all human, and occasionally we come across a problem we can’t solve, but it’s not an excuse to follow basic protocol, and it’s not an excuse to say, “Don’t come back.”
I’m not making any sense. But this pisses me off.
I worked in a hospital for ten years in California and I know what your going through with your doctors. Just remember doctors are like fish and there is a ocean of them. Interview more of them and find one that cares and will work for and with you. When it comes to hospitals bigger isn’t always better as you have seen from the ego’s you have had to endure and with your hopefully ex-Dr. Sun. Ask for referrals and second opinions as well. Ask the medical association for referrals for your symptoms as well. I have know very many doctors over the years and only a very small hand full of them would be near worthly of being someone I would even call a friend. I wish you the best and pray for you to find a physician that understands your needs and can treat you in a manner that you desereve. Having a condition of my own I understand your feelings as well.