I have struggled to write a blog post over the last month. The thing is, I wasn’t sure what to say. There hasn’t been a whole lot of progress regarding my physical state. If I’m lucky, I will be scheduled for a video EEG (to match movements with brain waves) in late January, but if not, it may be February or March. I’ll consult yet another neurologist in early January, and we’ll see if that brings any leads.

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.

I have been a whole lot of negative lately. A bundle of abrasive, morbid, and/or just plain whiny. I don’t mean to be, but it’s hard. It feels like the sickness has built this cage around me, a cage that only I see or feel, and though I try rebelling, there’s no way out.

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.

Yesterday

• 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.