Saturday, March 2, 2013
In Which our Heroine Looks for the Loo.
I am so sick of talking about Cancer and/or Medications. This blog used to be fun—I used to be fun! Occasionally, anyway. So, another subject: Dreams. As in, the kind you get when you sleep. Not about aspirations. I’m going for the light-hearted here! Seriousness is hereby declared out of style.
Some of the best dreams of my life are the “where is the toilet” dreams. Yep, I know. Highly applicable in the middle of the night. All of these dreams deal with detailed architecture—because you see a lot when it is such a very long journey to the bathroom.
Once I was aboard a space-ship ( Star Wars style, but the elevator in the back is all Star Trek). Pretty sure Captain Picard and Data were there. I had to get to the bathroom on a lower deck, but there was DIFFICULTY with the elevator. Unlikely that I reached my destination. “Make it so, Number 1.”
Then there was the locker room dream. It is hard to find the single bathroom toilet within. Lots of large, well-muscled girls that kind of scare me. And that’s why I have to sneak to the bathroom. Half-size locker for me (on the bottom level of course, which jams at a crucial moment), smelly towels hung on locker doors and benches everywhere, the sweaty sock smell that permeates every locker room since the advent of the Roman baths. Reach destination but well-muscled people just keep interrupting me. Also someone didn’t clean the toilet very well.
LDS church, Eva accompanying me, because she’s the one who has to go. Toddler = hurry. The nursery room takes up the whole basement, but for some reason random basket/volleyballs from the gym keep ending up there. If the nursery is big, then the rest of the building is tantamount to the empire state building. The hallways in this place have a lot of brown carpet that run half-way up the wall with a mauve colored paint above this. There are teal armchairs and sofas in the oddest corners (ala LDS church foyer style). The hallways are short and maze-like. And there are men’s bathrooms everywhere. In desperation I try one of those, but it turns out to be a maze too, just with more tile and towel dispensers. Not sure if I ever reach my destination. But I ran a lot, which has got to be good for the body.
There is the dream with the oddly circular building full of bureaucrats who keep passing me by, and who are terrible at giving directions. The walls are vertical wooden slats (pretty nice, actually) and the carpet is a uniform gray. The outer hallway runs full circle along the edge of the building. There are various doors toward the interior, and I must find the room. When I finally do, it is a very depressing bathroom indeed. Gloomy with cinderblock walls (think soviet architecture) and dripping pipes everywhere, occasional mossy-mold. The pipes are actually pretty cool because they twist everywhere, even diagonally across the huge space (think M.C. Escher). But the toilets are everywhere, and you just can’t find the right one. They are varying heights, some set atop many cinderblock steps so they look—yes—like a throne. All are connected to an array of pipes (the lovely U-bend is especially present). All are cold and yucky. Destination reached, but too repulsed to go further.
Fast food restaurant-style bathroom, has black and white tiles on floor. Found easily, but there is the smell of French fries everywhere. The stall doors are two or three feet off the ground and the toilets are very tall. You feel like you are sitting in a highchair—if you can climb that high, which is gross because you'd have to grab the seat and hoist yourself up. No sink apparent. This is a problem as you are in a yucky fast-food bathroom. It looks spick and span, but you know better. Little germies are probably everywhere! Destination reached, but can’t quite get up the courage to use said facility, because you need a sink in the room, dang it!
Bathroom with lots of stalls, a regular taupe-colored affair. The toilets are normal, but the stalls have some serious problems. Some are too high, some are too low. How is a girl supposed to retain her modesty here? Some are pretty good, but all these women keep stealing them. Just as you approach, one of them comes wheeling in, cutting in front of you and slamming the door in your face. So you finally find one that will sort of work—the stall goes up to your lower rib cage, and right now that’s the best you got. You’re pretty excited, because you really gotta go, but then suddenly you are naked. No modesty, no go. Destination finally reached but to no avail.
Another black and white bathroom—very large—and communal. There are toilets everywhere. They sit back to back, sometimes side by side. Very crowded. But none have stalls. There is a general rush to find the best toilet—shiny ones are the best. People scurrying everywhere like ants. I myself am stalling because I can’t figure out what to do—I like walls around me in these crucial moments, dang it. Oh crisis! Panic mounting. Dream truncated. I woke and found the bathroom adjoining my bedroom.
in Which there are Alchemical Changes.
I will make this brief. The anti-epileptic oxy…whatever turned out be Public Enemy No. 1. I have never experienced such violent vomiting before. Four days after beginning it, I found myself on the phone begging my doctor to let me quit. Lamotrigine suddenly didn’t seem that bad—even with seizures added to it. And Keppra was starting to look like a day-dream. Ah, the advantages of hindsight.
For the last month and a half, I have been cycling off of Lamotrigine and going back onto Keppra. The change in dosages is much more abrupt this time, every week stepping down 100 mg per day. I’ve really been able to see the effects that come from such sudden changes. At first it was up on Keppra: hard physically and emotionally. Then down a step on Lamo: a bit better both physically and emotionally. Another step down: better physically, BAD emotionally. Next step: better physically, absolutely wonderful emotionally—possibly somewhat manic: lots of action and not enough sleep, happy but so very tired. Next step: physical effects nearly gone, slightly less happy. I can literally feel the Keppra settling into my system. Lamo up and downs gone and the incredibly stable, but ever-annoyed me making a comeback. Forget history, forget tradition, forget culture—I am a product of my chemicals.
And through it all: terrible insomnia. Most of the time I get to sleep around 2 or 3 am. It’s kind of like living in a happy little fog. Sounds like something Bob Ross would say. I am gaining the greatest respect for people who deal with this as a mental illness: the depressed or bipolar who are constantly tweaking their medication. Rough stuff. I would probably rather go through brain surgery again than go through a couple more years of these alchemical experiments.
Friday, January 11, 2013
in Which our Heroine Airs her Dirty Laundry .
On Thursday morning I had a seizure, a facial tick that went down into the neck. Clearly my new anti-epileptic is a massive FAIL. So now I must set my medicinal pal free where it can fly in the wind, (much like dirtly laundry hung out to dry). Mine erstwhile medicinal friend was also messing with my ever-erratic emotions way too much—now that’s some grimy laundry for you, kind reader. Goodbye lamotrigine, and good riddance.
Enter oxy… something. Ah, here it is: oxcarbazepine. (Who names this stuff? It’s ridiculous). Another anti-eppiletetic, eteleppic, epliteptic, epileleptic. Try saying it three times fast. Ready, set GO!
So far I am really, incredibly, unabashedly, furiously dizzy and off balance. I am an adept when it comes to walking into furniture. Thus far my wonky combination of lamotrigine and oxy-something seem to be a 24/7 thing rather than the previous 3-4 hour torture that has been my life every day from 11 to 3 pm. I hope that I will feel better when current archenemy No. 1 is purged from my system. I will know in four months time. If that doesn’t work then I will begin, or possibly go back, to a different medicine. Or perhaps a combination? Up and Down, Up and Down. I have always loved roller coasters.
It’s rough, and I will tell you truthfully that this has been an eventful, frenzied, confused, out of the ordinary, awful week for these and other reasons I cannot articulate at this time. But I will survive, prevail, triumph over, keep my chin up, fight the good fight, and continue on. Think of how much I’ve already been through. Nothing can stop me now. Except that I have to wait another six months to drive legally. Nevertheless, I continue on with optimism, though it be at a slower pace. Kind of like fresh, white, clean laundry blowing gently in the breeze in a quaint mountain valley.
Friday, January 4, 2013
In the which our Heroine Backtracks to Prior Events.
Santa came a few hours early this Christmas. He did not use a chimney. The doorbell rang. I opened the door, and then closed it again. Like on TV when the character can’t believe what they’re seeing so they shut and open again just to make sure it wasn’t a figment of their imagination. Well, there was no such confusion or romance in my reaction (but isn’t the parallel funny!). It was cold, and I had a bag of bread in my hands (PBJ’s commin’ right up!) and I had to put it down because there was no way I could hold it and all the gifts at the same time.
Yes, I said gifts in the plural. You know, in general, giving has some sort of limit, but this easily crossed the line. The persons/Santas in question remain anonymous despite my many cognitive efforts.
Take it from someone who has time and time again proven that she is terrible at gift giving, these presents were good. And they, combined with those of extended family and friends, were ALOT. Christmas morning came and there were still more for my girl to unwrap. Eva was rolling in the splendor of so much wrapping paper. She was clearly experiencing new horizons in toy-play. It is clear that she is still experiencing this as she has neglected all other and older toys in favor of the new. I don’t think she’ll ever go back.
I was not soliciting for charity in my last post, but it came anyway—and in such incredible generosity. We felt this charitable love from other unexpected and fantastic presents on our doorstep that evening—again, really good—from good friends who spilled the beans the next day (surprise! Thank you Hendersons and Rappleyes), to a delicious pumpkin pie. Of course, the expected gifts received in trade far exceeded my own miserable presents. I feel the largesse, but cannot seem to produce it. Except for mine to Eva, which of course lay at the heart of my sarcastic “anger” toward St. Nick. Due to the benevolence of others, I was able to take credit for the other big favorite of the day: A box of Disney Princesses with multiple changes of clip-on dresses. How could a three-year-old girl not love these?
And so, to the Santa’s in my life, I raise my glass (of left-over eggnog) in salute.
Saturday, December 22, 2012
in Which the Little One Writes a Letter.
On the Eve of the day in which our world was to end, my three-year old quite obliviously wrote a letter to Santa Claus. She chose the letter A. And then she drew a balloon and colored it black. On the outside of the envelope she instructed me in very fine detail to tell Santa that she wanted two toys. No more, no less. That night, she gave thanks for Santa and his reindeer. Also, thank you that I am going to get two toys. At one point in time, Eva had known that this holiday was about Jesus, but then she saw Santa in the mall. I’m pretty sure that he’s the one who whispered the idea of two toys in her ear. And now it must come to pass. There are no outs on this one because she truly believed him. Two gifts—from Santa, because he never lies….
Meanwhile, I face the cruelest of all facts: I spent good time and money buying my daughter the best of all gifts (exact number: two). I had visions of being the coolest mom ever as Eva opened her princess stuff—forget visions of sugar plums. We don’t have a ton of money for this kind of thing. Now the parents are stuck with giving a tutu (her third), a hand-me-down Tinkerbell purse, and a toothbrush. All these were supposed to be stocking stuffers (thanks for the full stocking, Santa)! For the good stuff—scratch that—all the stuff I have to give credit to the dubious Kris Kringle, alias St. Nick. Unbelievable.
It’s a good thing the world didn’t end, because I would be charged with a)failure to teach said child in all things religious and b)strangling a fat and jolly man.
Monday, December 17, 2012
in Which Legalities Greatly Affect our Heroine.
I don’t get out much.
About five months ago, I had a major seizure and it takes the grand total of six months for quasi-epileptics like me to legally drive. I am not actually epileptic and I don’t plan on having a seizure anytime soon, yet I am illegal. Oh-how-traumatically-unjust.
But maybe I’m not seeing this the right way. For one, I now know who my real friends are—they are the people who routinely drive me everywhere. Additionally I get to spend a lot more one on one time with my daughter. I appreciate my husband even more because he is my constant companion: i.e., chauffer. I get to do a lot of reading. With all my spare time, I do a teensy bit more housework.
The unfortunate downside is that I don’t have a lot to write about as far as current events. Right now, I am the event of every day (along with my daughter and her shenanigans). In that vein, a summary of me and my life: I feel pretty good, though I still have tired/dizzy spells sometimes (not every day). Emotions fairly stable (except for that one day…). My head shakes when held in the right/wrong position, like an old woman. This can be very disconcerting when teaching a RS class, solution: slump as much as possible and tip head alternatively from left to right. If you are lucky, people will think you are concentrating really hard on various comments—not that I wasn’t. (Promise--the comments were exceptional, but my slouchy neck issue was a distraction on occasion.) Grade: B+. Oddly enough, it isn’t so bad to be awkwardly off-balance. It’s the driving thing that’s really getting on my nerves.
Friday, November 23, 2012
In which the Fruitbasket goes Bananas.
About a month ago, I was completely unable to control my emotions. Here’s a visual for you: One Sunday, about 15 minutes before leaving for church, I began crying for hardly a reason. I could not get myself to stop. In the end I was so red, puffy, and tired that I opted out of attending my Sunday meetings. No way was I going to show up looking like that. Thankfully, that has passed. Sort of.
Several times in the past three to four months, I have felt a sense of dizziness and vertigo—especially when I was at my largest combined dosages of Keppra and Lamotrigine. This has gotten considerably better as the weeks go on, though I still have a rough time every day from 11 to 3.
Since I began the decrease of Keppra, vision issues. At first I thought I was having trouble focusing my eyes—as if I was crossing them and unable to fix on an object. Sometimes it almost seems like my vision is getting better, like I’m wearing prescription glasses that are too strong for me.
All of this doesn’t even cover the confusion, memory problems, and general stupidity. But this a topic for another day. I still need to work these things out in my own head. If you can’t tell, I’m not really sure what is going on here; possibly “I am going bañañas and there are bats in my belfry,” thank- you-Madonna.
Thursday, November 22, 2012
In which our Lady is Sincerely Grateful.
Facebook has people who go all through the month of November and up until Turkey Day with incredible gratitude. Every day they post something for which they are thankful. I’d like to think that I have at least as much to be thankful for as them, but I am unwilling to get on Facebook every day. So, although I could give you a list of exactly 22 one-liners, I will here do something a little different. By the way, I mean no disrespect for those admirable facebookers who…one-line. After all, they are my inspiration today. Okay, so here goes:
Thanks to all the people that are constantly thinking of me and helping me out. You know who you are and FYI I hope to get actual Thank-you cards mailed out someday. Meanwhile I will shout my gratitude out to the universe.
There are those who support me physically—thank you for making me food and providing the occasional child care. These people drive both me and my child places when I cannot. They open cans and tie knots when my hands get all weak and shaky. They teach my child and nurture her when I am weary—just so weary of doing it all. There are so many of these supporters. The best word to describe them is simply this: they are GOOD. (As in “God created the world and it was good….”)
We move then to the emotional/mental/spiritual support. There are those who share various parts of my malady and who are open with me about what they are going through. Because of their empathy and candidness I learn from them. Many are those who lead by example in addition to actually guiding me into spiritually uplifting situations when I can’t seem to find true north. There are those who listen to me when I’m down, and who deal with my insanities while never making me feel dumb. I know I’m not driving at full throttle (is this even a commonly-used phrase?), but people are mostly kind to me about that. I realize that I often exhibit stupidity/slowness/incompetence/Valley-girl brainlessness. It can be really humiliating when I am the object of a joke that I don’t even fully understand. I tell you now that KINDNESS is a priceless gift.
As I read back over what I have just written, I realize that my husband exhibits all of the goodness and kindness addressed here, in all its finite detail. You know, when I was lookin’ for a man back at good ol’ BYU, I picked out kindness as one of the top three qualities on my I-could-date-this-guy list. And so, finally, I come to another point of gratitude, I am so glad I found Jon.
Saturday, November 17, 2012
In which our Heroine Considers Dying—um I Meant Dyeing.
My hair is going gray. (sudden sob) I’ve noticed a few gray hairs sprouting for some time, but last night I saw more. As I looked in the mirror just before bed, I saw that my hair was a little lacking in luster—yes that’s the word: lackluster up near the scalp. It seemed pale. I thought to myself, Is my hair thinning up there? (shock: whatever this is, I will almost certainly sob soon) baldness seemed impossible given that I have always had this huge mane. So I crept closer to Traitorous Mirror, and found that about an inch from the scalp on either side of the part was pretty—scratch that word—very gray. (surprise hiccup sob) What? This never happens, does it? All the people I know had a few grow at first then slowly more begin to turn. But an abrupt inch? What is that about? (frustrated sigh-sob).
Gray is such a boring color. Why can’t we at least use grey instead? The British can make anything look right by dressing it up in faux splendor. Gray (yarrgh sob). Grey (silence, almost).
Meanwhile, I woke this morning and immediately thought, my-hair-is-gray. (groggy sob) I tried to lie there longer, but it was too pathetic. (pathetic sob) So off to the shower I went, uselessly hoping to wash the gray away. Oh wait, its hair dye that washes out. (wet blubbering sob). Oh no! What if I have to start dyeing my hair! (mnmmmnnn: high whiny drawn out sob) Then: (sharply indrawn breath ending in shaky sob) Dyeing sounds an awful lot like dying—are they even spelled differently? Microsoft Word tells me that they are. Still: (hounds baying to the moon howl/sob).
Things I will lose if I truly turn gray:
The potential ability to flaunt.
All final joy in looking in the mirror.
The final, grasping hold on youth.
Money due to hair coloring product.
Probably the nice texture of my hair as it will be replaced by the wiry grayness of both of my grandmothers.
My husband’s love. Just kidding, I hope.
All appearances of normality. I’m already weird enough, I don’t need to add a semi-youthful face staring out of an ugly gray.
Happiness, because I can only be depressed from now on.
My pride, as I will have to face the certain indignity of using the word gray at the DMV.
The former belief that brain surgery is worse than anything I could ever experience.
Alternativly, I guess I could show my gray stripes and go out with nobility. After all, I have earned them, haven’t I? The problem here being that I don’t have a noble bone in my body. Pride yes, nobility no. Oh how I mourn my misspent youth (grief-stricken, somewhat despondent sob) May the humility stop now (fervently sobbed, quickly stopped). Well, I don’t have to let it get me permanently down. This one I can hide. I will fight this turn of events. I might even do it with richer color (short sob of quickened resolve).
Thursday, November 15, 2012
In which our Heroine takes Drugs.
What happened after/during the seizures:
I now go to a neurologist by the name of Dr. Troxell. If the true sense of doctoring lies in the ability to heal, then she passes with five stars. As an aside, she happens to know certain members of the Dahle family. Ahem. I am pleased to induct her into my corps of doctors. Conversation is easy. She actually listens and seems to understand. She heals both physically and emotionally. I’ve had some excellent doctors in my short time, but they quickly lose interest in me once they realize that death isn’t imminent. With them, I am to be monitored—at a distance. The need for anti-epileptics is both a current and continuous problem. For this reason, I am glad to have someone like the good Dr. Troxell.
At that first visit, we discussed how my then current medication, Keppra, needed an increase in dosage. At the thought, I literally felt a sense of panic when it was mentioned—hair standing on end and all that. I had taken that dosage before, and it was awful. That’s why I (with my P.A.’s clearance) had tried to go lower and then had those seizures. Hah! Great solution.
I personally hated Keppra, but to be fair it was excellent as an anti-epileptic. On the other hand, it was tough on my otherwise tender emotions, etc…. On a graph: a gently undulating line the mean of which is lower than my usual. Steady and… boring.
Instead we decided to try the switch to another medicine, Lamotrigine. I am still trying to figure out if it works well for me. Some medications take time to get into. You increase slowly until you reach the target dosage. In my case, three months. I reached full dose and then leveled off for a few weeks. I felt great. Then I had what I felt was a seizure—small but it had that feeling of mind-freeze and then uncontrolled jerky movement. Welcome to the world of intimately knowing a seizure. It comes, you instantly recognize it. “Oh, hello erstwhile friend. Not glad to see you.” Anyway, Lamotrigine was increased a teensy bit, and then I began the too-slow purging of Keppra.
Here’s the thing, changing dosages is murder on me and I have to do it every week. If I can just get to that happy place—the one where I stay constant for a few weeks—then I feel great. The weekly adjustments, though small, are severely hampering my lifestyle. The good news is that so far, Lamotrigine seems better for me emotionally. Once again I wield a pointer at the imaginary graph: its gets me back to a higher mean, though I do have a tendency to go up and down a lot more. That’s okay with me—feeling emotion is worth it as long as the ups/downs don’t get too high/low. Anyway, my creativity is back and that is almost good enough for me. Well, we’ll see what happens. Taking both Keppra and Lamotrigine at the same time may be quite different than doing either individually. The clock ticks. Eventually we will see.