Going Batty

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.

 

Better Than the Obligatory Thanksgiving Post

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. 

 

 

The Brave and the Grey

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).

That Happy Place

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. 

Summarizing

In the which Writing is a Relief.

Months and months since I’ve last written!  I stopped for two reasons:

1. I began to have seizures last spring and into the summer due to my medication being too low.  They made me tired.  Once I have a seizure I’m basically out of commission for the next five days.  The cycle is this: I have a seizure, get so tired that I can barely function, then become petrified that it might happen again, and am then afraid to do active tasks that might set off another one.  I am currently working to solve this problem.

2. I started to feel like I was hanging all my dirty laundry out to dry.  Sometimes, a person just needs some privacy to deal with personal stuff. 

To explain: One of the initial reasons I began this blog was to let friends and family know what was going on during my recovery.  That seemed less necessary as the months went on.  However, after all this time I do still have the occasional health-based challenge.  If people don’t know about it, then incorrect assumptions happen.  They may think I’m just fine and can physically or emotionally handle everything another person could.  On the other hand, there are times when I am completely discounted because I have health problems.  Even if people do know what is going on, they still don’t understand how it is to work through it day by day.  The closest thing I can do toward correcting such assumptions and this lack of understanding is to write descriptively about it.  

Additionally, sometime in the past few years I went from introvert to extrovert.  I need to get this pent-up emotion out somehow.  Unfortunately I have trouble getting coherent words out of my mouth and now occasionally stutter when I try to speak.  Writing is so much easier.  Actually, it’s a relief.  

The Throne of all Showers

In which our Heroine Sits.

Today I used a shower chair for the first time in two years (while showering), and I thought to myself, “Wow, I should really write about this because my life is full of unimaginably bizarre experiences.” 

Using the chair today brought back some memories.  Like the time when my mom had to shave my right armpit for me because I was paralyzed on half my body.  (Hey, I’m just letting all you healthy yuppies in on some real-life sickie information here.)  There is always the lovely memory of my mom (bless her soul) putting A LOT of towels down on that cold chair and pretty much anywhere I was going to be just so I could stay warm, which is ridiculous because those who truly convalesce have no energy to dry and braid their lustrous locks of hair.  Warm towels are useless against the wet head. 

However, none of the above experiences applied today.  I needed the chair because my currently fluctuating medication makes me dizzy for several hours each day.  Of course, that precise moment of wooziness was the only time I had to take a shower today.  Usually I avoid the problem by wisely ordering my schedule around the medication.  And so goes my life: largely directed and certainly influenced by my health.

And here the slightly modified part that I write in my journal at the start of a new year: I hereby promise to write much more often in this incredibly important, wonderfully interesting, and shall we say, indispensable blog.  I will even post a summary of the past several months so my indefatigable fans will be current on what is happening otherwise.  I know this because it is already written.  I set the date and time for 11/14/12 at exactly 2:03 p.m. Alaska Standard Time.