I have not made any New Year’s resolutions for some time, and 2009 won’t be any different in that regard. Nonetheless, I do have a theme word for the year: live. It means that I want to embrace life as fully as I can, with all its beauty and all its flaws, and this time, I will not disappear unto myself.

In my list of Places Where It’s Not So Great To Randomly Run Into People, ‘hospital’ probably ranks only under ‘funeral’.

Touch
(beat)
Touch
(beat)

Contract
Withdraw

Touch
(beat)

Buzzing
Veins
Touch
Pain
Sadness
Relief
Need
Touch

Contract
Withdraw
Contract
Withdraw
Contract
Contract
Contract —
Withdraw

—-

The definition of myoclonus, via Wikipedia.

Tomorrow’s my 4-hour video EEG at Stanford and I am hoping that this test finally shows something useful. I am tired of being poked and prodded and not having them find anything when clearly, something is weirdly wrong with my body, as demonstrated most clearly when my reflexes are tested with tuning forks and I spasm strongly enough to send them flying across the room. I am tired of doctors using words like “remarkable” and “fascinating” to describe me because I’m a patient with shiny new symptoms the likes of which they haven’t witnessed, and yet not following up to test me for anything out of the generic path. I’d like to somehow give life the finger right now just for kicking my ass so much. Given all that’s happened in the last almost four months, I think I’m perfectly justified in having an immature and raw angry moment in which I turn to the universe and say: cunt.

Yesterday was the first day of the spring semester. I’d been trying to slowly extend the number of hours I’ve been out and about per day (even returning to work for a few hours last week) so that school wouldn’t be overwhelming, but it was too much anyway. It’s frustrating because regression quickly beats out progression, and while I may (mostly) have patience for others, I seem to be running short of it for myself.

The neurologist’s secretary refused to ask the doctor about writing me a note for my professors. “I don’t think we ought to do that sort of thing,” she sniffed, as if I was asking her to type up a note condoning my consumption of alcohol during class rather than “She has a condition which may cause her to miss classes on occasion.”

I guess trying to expect myself to be normal again before even being diagnosed is unrealistic, but I felt the need to experiment with “mind over matter” anyway, as I absolutely refuse to let this condition define me. I don’t want to be The Sick Girl, I want to be the girl who does this, this, and this, but happens to be sick. I would like to be more than I am right now.

Wish me luck that the new general physician I’m seeing tomorrow (since my previous new GP retired his practice unexpectedly) will actually look into my condition rather than brushing it off like just about every other doctor? I feel like I’m playing the doctor lottery now with the number of medical professionals I’ve seen in the last nearly four months.

“Well, not necessarily. You can be well-liked by the few that know you,” I pointed out.

I started writing about being sick because I was scared. With so many emergency room visits, each one escalating in severity, I panicked. What if I didn’t make it through the next episode? Nobody had answers for me (and they still don’t). I wanted to leave something behind; I wanted people to know what had happened to me if they got curious. I needed to tell my story.

But now, the fear has settled and blogging so much about the situation feels almost embarrassing. When you wear your pain on your sleeve, does that cheapen the emotions? It may be a big part of my life, but I don’t want to let it overtake me.

Since I’ve been a bit more stable again lately and in the midst of winter break, I’ve had even more time to reflect and think. I’ve been trying to reexamine who I am and what I want, hence the recollection of an old conversation. Before all the chaos, I thought I had gotten to the point where I finally had everything laid out, but the thing about illness is that it strips you down to your very core, and I started floundering because I couldn’t remember anymore what my center consisted of.

These days, I often feel old, but I have to remember that I’m still just 21. I don’t want to watch life pass me by as the doctors half-heartedly work on a diagnosis. I may not be able to do as much as I used to, but I think it’s time to see just how much I’m capable of.

Hello 2008.

Since I vented the last time, I had one more hospitalization. While trying to visit me, my mother was rear-ended in a car accident and suffered a concussion in addition to her spine becoming somewhat misaligned. She now has to attend physical therapy regularly, making us often a household of two out of commission.

There has been one bright spot in the midst of chaos, however: the adoption of little Quixy from the Humane Society. He’s an oddball of a dog, as he doesn’t much like walks or playing with toys, but loves rolling around mats endlessly. Still, I fell in love with his sweet nature immediately and he’s the source of much entertainment and comfort in this holiday season.

If there’s one thing this whole experience is teaching me, it’s strength — strength of will and strength of courage. Strength to stand up for myself and do what I have to in order to keep moving forward. I politely refused to leave the counseling center until someone would see me and finally got a regular psychologist to talk to. I told off the snotty Stanford receptionist and got the doctor to mark my case as “urgent”. I worked hard when I could and pushed myself to finish up the school semester with two A’s and one B+. I’m applying for scholarships to try and ease our financial burdens. And when I feel well enough, I go out for a bit to remember a taste of normal.

People assume things when they hear the word sick. “But you look well,” they offer. “Well, chin up, they’ll figure it out,” others say. And the worst is the question: “Are you better yet?”, which is different than “How are you?”, because of the way it forces me to choose between yes or no. Then, a simple “no” is not enough; that raises concern. Details are wanted. And I know they mean well, know they have good intentions, but when I have to continually go over the story that is still in progress and still without an end in sight, it becomes depressing.

“My next Stanford appointment is December 20. I will be consulting a general physician this Friday, with the special focus on medicinal dosages. No, they don’t have a clue what it is. No, the medication is not really helping. Yes, I am fine right now. No, it comes and goes. There are different symptoms. No, the spasming itself doesn’t hurt, but sometimes my joints and fingertips and toes do — a lot. Yes, I am doing fine in school considering. No, I cannot afford to take a semester off.” And so on and so forth.

I feel like I am losing myself in this battle; I don’t even know what exactly it is I’m fighting. I want friends around, but I hate having to ask repeatedly. The only place I’d like to be really is the hospital. It is a sad state when your dearest wish in life has become lying in a hospital bed while being seen by professionals who will help. And when I can’t even get ahold of a counselor to talk about it all so I don’t have to keep burdening the ones I love, life is seriously fucked up.

• Got my fifth blood test done. You would think by now that I would’ve gotten used to it; you can still see the marks on my skin from the other times. But every time they remark on my tiny veins and I’m looking away and trying to breathe in deeply (INoutINoutINout) and then I feel the needle’s prick, I’m thinking, Holy shit and trying not to whimper like the wussy I am.
• Stanford appointment, during which the new neurologist saw me for maybe…oh, five minutes (“your tests look fine, we’re not sure what it could be”)? The student who was interviewing me on my condition and giving me the physical exam spent literally 10x more time with me than the doctor himself. I guess it’s true what a friend said: it’s worse when they think you’re an uninteresting medical mystery. I’m now being referred to the epilepsy clinic (even though we are all pretty sure it’s not epilepsy, and I already had a sleep-wake-sleep-wake EEG done), from which someone will call me and if I’m lucky, schedule me in sometime before Christmas. I’m now taking bets on whether they’ll end up referring me to another clinic/department (with me being on the side of DUH, yes).

This week

• Hello, new symptoms from malfunctioning body. Oh, what’s that? You decided that I should have more chest pain, only of the longer-lasting and not as sharp variety? Wait, there’s more? Pain in various other new areas and even more heightened sensitivity to temperature? You REALLY shouldn’t have.
• Went over my insurance coverage. Thankfully, we’re not going over the lifetime maximum yet, but yes, the bills are certainly mounting. And why do I keep getting billed more than I should for certain things?!
• Got my results from the basic blood tests back (done last week after I found out about the whole ER debacle). Lucky for Stanford ER/my old neuro, they didn’t show anything out of the ordinary.

I’ve started just having to view this whole thing as ridiculous and finding humor wherever I can. Otherwise, insanity would have claimed me by now (and we’re not ruling out the possibility that if this continues, IT STILL MAY). As it is, you can believe that if New Year’s hits and I still don’t have a diagnosis, I’m going to be plenty unhappy.

But! There is some happy news from the week, which include me finally having made up my midterms and a friend visiting and awesomely bringing me balloons, a DVD, plus karaoke software for my laptop (Kevin, you ROCK). Also, instead of spending an obligatory Thanksgiving with people who usually make me crazy during the holidays (sorry, family), I’ll be de-stressing over at Annie/Angie’s. So yes, I do still have things to be thankful for…and when life is this crazy and weird, I’ll take all the good I can get.

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.