Since I seemed to be finally back to normal last weekend, I’ve been trying to ignore any pain I’ve had in this past week for the most part, because how can it be possible that I’m not healed yet? Can’t I make myself better from sheer force of will?! No?! Argh, fine, I guess I’ll schedule yet another CT scan then, as suggested by the urologist, although the fact that it’ll be my fourth in less than two years freaks me out ever so slightly.

The silver lining is that I now have advice and opinions on various hospitals and doctors in my area. Need to figure out where you should go or who you should see (in Northern California, around the South Bay)? I likely can help!

(Oh, and thanks so much for the supportive messages and comments, by the way. I do appreciate them, especially in light of the fact that I’m finding myself increasingly obnoxious in the midst of my neverending litany of rants/vents/complaints. It’s like verbal diarrhea.)

The past two weeks or so have been spent in varying degrees of physical discomfort, all because of a stubborn little stone that formed in my kidney. For most people, the ordeal would have quickly been wrapped up in a few days, but as it turns out, I needed to undergo shock wave lithotripsy in order to resolve mine. What’s thrown a wrench in the entire recovery process though is the fact that apparently, I am sensitive or just seriously allergic to ALL PAINKILLERS. The doctors will prescribe one thing, only to have to add on another medication to combat the effects of the first one, and then when it turns out neither of them are working for the better, the whole process has to be repeated again. In the meantime, I am often in violent amounts of pain while combating allergic reactions and frequent spasms.

This morning I woke up at 4am and was in serious distress vomiting and whatnot until about 10, at which point I fell into an exhausted sleep for a few hours. Now that I’ve determined that I can again keep fluids down, I have gone back to drinking copious amounts of liquids and am resting outside to try and regain some energy, or at the least, peace. Although almost every other day has consisted of doctor visits, today I’ve been rather fragile so we’re just monitoring my status closely.

Having visited doctors many a time over the past few years, I’m extremely tired of being sick by now. Since it isn’t clear what my kidney stone was caused by exactly (with one possibility being the medications I had to rotate through last year) , I’m just trying to be more vigilant about all aspects of diet and exercise in general, although the latter hasn’t gotten a lot of attention yet, due to my often being on bed rest. I cannot wait until I’m better again.

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.