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.

It is 3pm. I have just managed to drag myself out of bed, but only far enough to my computer desk. My symptoms are not terrible today — just the rash and mild spasms so far. But it’s times like these, in between having the physical afflictions completely overtaking me, that can be the hardest of all. Because then I have time to think, to reflect on all the things that have been happening to me, and it is so overwhelming, I have trouble finding motivation to do much at all, and emotionally, I shut down and become numb.

In the back of my mind, I know that I do want to be brave, to be strong. To believe as much as everyone else that I am going to get through this.

My friends’ support has meant so much to me throughout this process, and I honestly would not even have been able to get this far without them. And so I don’t want to call and confess about the emotional toll this sickness has been taking on me. How can I be so ungrateful? It could be a lot worse. What right do I have to feel this way? All is not lost yet. It has only been a month. And they have already been there so often, and I should be independent enough not to need someone around all the time.

But the truth is, in the past month, sometimes each minute feels like an eternity, and as much as I try to tell myself that I am being overly dramatic and need a slap back to reality, I feel suffocated by my thoughts.

I write this entry not for pity, but because I know that when I go back and read it, I will be disgusted by my own whining and saddened by my lack of optimism. And maybe it’ll be a push in the right direction, in digging deep within myself and finding the strength to just keep moving. One day at a time.

It has been five months since I told you that I didn’t think it was working. It has been about seven since you first walked into my life. It wasn’t love at first sight, and anyway, I’m not sure I believe in such a thing. It was a series of random run-ins and the constant urgings of an acquaintance which led me to decide what the hell, let’s jump in. And it was wonderful and it was messy and everything in between. And it took so much time to recover.

Fast forward to the present. I am sick and at this point, I am not so sure anymore the doctors will figure it out. My health is up and down every single day, and simply because you catch me on a good moment does not mean the next will not be horrendous. I feel as if I should post a sign somewhere, to be changed throughout each phase: Good time. Bad time. Now unable to walk AND spasming! Having trouble breathing… Every medication save one seems to impact me negatively, even when the side effects are supposed to only occur in 2% of the general population. And not a single one alleviates my symptoms as it should.

I am not working anymore, and I’m about 10 chapters behind total for classes. I have missed two midterms and hours of the project for my honors class.

Sometimes it is difficult to even get out of bed, I am so exhausted.

And then there is you. And honestly, I have no room to think about it now, to contemplate whether it’s a good idea or not. But I know this: we have both changed and stayed the same in the time apart. And yet, when you are around now, I smile more. I laugh. And sometimes, for a few seconds, I even forget that I’m not okay health-wise altogether.