Here's the visuals

Scars are on left chest and to the left of my voice box. Glued not stitched, so there should be less scarring.

Voice is already starting to change a bit, just because of how deep he had to go to get to my vagus nerve. As long as I don't lose my southern accent I really have very little opinion about it. Lol

Surgery in the Morning

So tomorrow I have to get up, like, before God (not really I know) and be at UMC at 5:30 a.m.

Scared, excited. Mostly hopeful.

Decision Time

Well, I don't have enough vaca/sick leave to be out for surgery this week, but my husband and I talked long and hard about it over the weekend...

Basically, which is more important?

Putting it off, possibly indefinitely, because it might piss off a supervisor...

Or getting it done so I can get my life back, as well as respecting the fact that they have a crew of specialists lined up for Wednesday already scheduled...

I'll take the second option.

No Understanding

I'm sure I'm not the first person to make the observation that non-disabled people don't understand those of us with hidden disabilities.

"What do you mean, your head never really quits hurting?"

"No wonder you can't plan a vacation since you use up all your time sick and at doctor offices..."

"I hope you don't get behind on your paperwork."

And my favorite...

"You don't look sick..."

This Time Next Week

Hopefully this time next week I will be lying here recovering from VNS surgery...

I can't really afford the time off, being that migraines/seizures, and now a damn sinus infection, have eaten up all my vacation and sick leave. But in an effort to end the seizures and comorbid migraines, it might be a good investment...

I just want my life back.

F√¢|<ing headache and sinus infection for over a week. Lost 2 days of the time I was going to be off for surgery,  and I don't have the stamina to work over for the comp time I would need to be off. So will get with the doc and see if we can schedule the vns for the last work day in June so I can have off the week of July 4. Which would out better for me recovery-wise anyway.

Out of Sync

I don't know if it's a seizure or a reaction to the benadryl, but I feel so out of sync with the world. Like I'm supposed to be somewhere else, or doing something else...

Strange....

Very unsettling ....

Summer Cold

Caught the freakin' summer sinus crap that's going around. Treating it with over the counter meds because my nurse practioner won't prescribe anything 2 weeks out from surgery, and knowing this surgery clinic it will take them a week to return the call.

Here goes nothin'!

Yay!

Got my final CEU certificate today!

So one less thing for me to stress over...license should be renewed before June 30, with a few days to spare!

Now I'm going to take a nap. That little seizure did my energy level in...

Funny, the milder seizures tend to take the most out of me...

Got a handle on my CEU stuff.

Got a consult with the neurosurgeon on June 19 with surgery on the 20th.

Damn headache back again...

Panic attack happening...actually I've learned this is a type of seizure...

Fun...

Sense of Failure

The hurrier I go, the behinder I get...

Heard that once, and it describes where I am. So many projects to finish up...CEUs, TNR proposal,  have decided to put off applying for grad school...I don't care if there IS a full-ride grant available...if I flunk out because my brains are scrambled, it will just make life harder.

I used to be a shining star with so much potential...straight As, geek and comfortable with that, then I started getting sick in my late teens and we didn't know what to call it back then.

Now I just have to decide how I want the next year to go. I need to take it easy on myself, but not be aimless. I need to decide where I want my life to go.

If the VNS works, I should be in a lot better shape in another year than I am now. THEN I can make more "serious" decisions, more committed decisions with long-term ramifications.

It's hard to see myself as disabled, or at least inconvenienced. But it's where I am. Not WHAT I am.

Rambling now.

So tired and scramble-brained (a term I much prefer to my mother's descriptor scatter-brained).

Cooking...or lack thereof

Dinner now takes twice as long to cook as before, because I can't concentrate on two dishes at once.

Like this chicken and egg noodle creation from last night...

Had to do the chicken first. Then the noodles. Can't do both on separate burners because inevitably one will scorch.

Grrr...

Woke up shaky, blood sugar through the floor, must do simple stuff like remember to eat at regular intervals.

BTW Krystal makes awesome scramblers!

Took cat to vet to the tune of $258.00.

Lost the container to mix the medicine they gave me IN THE VAN DURING THE 10 MINUTE DRIVE HOME!!!

Talk about a frustrating Brain Fart!

Napping now to see if I can get functional for the rest of the day, which unfortunately will involve clothes shopping, which I hate. I've picked up several summer blouses which should be incision-friendly, but need a skirt or two to make them friendly for work in summer in Mississippi.

Interruptions in Routine

I despise interruptions in my routine, particularly extended ones which require my undivided attention.

Does anyone have ANY freakin' idea how unsettling this is for the rest of my day???

VERY frustrating, and short of a nap, my body won't "reset".

Grrrrr.......

I should know not to stay up late reading but I was THIS || close to finishing a book. Finally found one written in such a way that I could understand it while remaining interested.

No complex story twists, no alternate realities, no vampires. Just a little action and romance...a light read...the kind of free Kindle download I reserve for times like this.

Got TONS of books on the Kindle. Been through several trying to find one I'm into, but I can't focus on any of them.

By the time I read the second paragraph, I have forgotten what happened in the first one and am completely lost.

Or I read a few lines and they might as well be in Swedish for all my comprehension.

To get an idea how frustrating this is...I can frequently put away two full length novels in an evening, or three on a day off.

Almost forgot the damn near irresistible sleepiness that overtakes me during this phase.

Regular lack of sleep or rough nights can be remedied by 5-Hour Energy the next morning. Not this.

During this phase, I will even go home for lunch and fall into a hard sleep for as long as I can get away with it.

Terrified of the storms coming through today. After the flood last year where we lost nearly everything, I don't "do" rain...

PTSD is what they call it.

I freak out with severe or prolonged rain. Probably will never get in a swimming pool, lake, or ocean again. Don't like my daily showers and DESPISE taking bubble baths.

There is some discussion as to whether the VNS might be effective with the PTSD, and the depression/anxiety that go along with my particular seizure disorder.

Not much if any research on those yet.

But I'm a "perfect storm" of mental health issues, and if it helps with those, then there will at least be an anecdotal case with me.

Now I'm at work so I have to go pretend I'm not coming unglued inside as this storm gets closer.

Memories...Baby Swiss or Aged...there they go!

My memories are tricky - especially short term  memories - someone tells me something, and it goes into my brain and parks itself into a hole in the Swiss cheese. It's THERE, I just can't access it unless the hole opens up.

And, as anyone who reads this and who has epilepsy knows - the normal mind tricks for remembering things, from writing it down on paper (I will lose it 100% of the time) to high tech stuff like entering it on my Xoom or Galaxy phone - it is only helpful if I remember that I even put it there, which means I have to remember several things:

1. what format I "wrote" it down in,

2. where the device, paper, etc., is,

3. what information I'm looking for,

4. do I trust you to know that you actually gave me the information,

5. do I actually remember talking to you or interacting with you in the first place.

6. And in extreme cases, do I even know you or remember meeting you in the first place?

It's next to impossible to remember something you told me, if I don't even remember talking to you.

Prodrome Cycle Starting Again!!! Grrrrr......

Ever have one of those days when you are just in a grouchy mood?

Well, not the whole day for me, but just since I woke up from a nap a few minutes ago.

Now I feel all moody, snapping, want to just completely "GO OFF", but it's not about any particular thing.

But knowing me, I'm about as even-tempered and easy-going a person as you can ask for, so this is a RED flag.

I  have developed a pattern in recent months, usually starting about the middle of my menstrual cycle (ovulation), where I get just in an absolutely bitchy mood for a few hours, then the mood dissipates but the seizure cycle deteriorates over a period of 10 days to 2 weeks, with bad-ass migraines in my right temple, TONS of little sub-clinical seizures (brain farts), crazy memory issues (including hours or days I can't remember - sort of like a drunk blackout without the party), verbal issues (like right now, trying to find some of the words I want for this post...I can tell you that tomorrow I will be editing the hell out of it...but this is it for right now), loss of appetite, or alternating between starving and nauseous. 

In about 2 weeks, I should expect the complex-partial seizure from hell. My aura is a really an exaggerated panic attack (something little will happen and I will get all paranoid-feeling about it), then have what appears to be a grand mal seizure, which is actually I believe a  complex-partial seizure that involves most of my body although I don't lose awareness (I might not remember much of it later, but I am fully aware when it is happening).

NEWSFLASH ~~~

I just burned dinner. I NEVER burn dinner, even when I'm online.

Apparently I COMPLETELY lost track of time...

I started to get really upset about it. My very sweet husband just hugged me, and my question "chicken breast not worth it?" became "chicken breath not work it?".

See what I mean by brain farts?

This sucks.

We called the pharmacy and double-checked my Ativan rx, and ordered a refill - THAT is one drug I NEVER want to run out of!!! Mainly because it's my best bet for stopping this in its tracks, until I get stabilized on the VNS.

Miss Emma Nutmeg

Miss Emma Nutmeg (the copper kitten) and her tuxie boy toy Gizmo.

Emma, my little "seizure kitty" didn't want to lay down for a nap with me after work today.

She's really attuned to when something's wrong or about to happen.

No training...she's not a service animal...it just happened when I had some of my first serious seizures.

Usually she's my little shadow, and I guess I'm going through withdrawals...lol

E-mailed Sandra this morning - hopefully we will have an answer and appointment set by the end of the day!

Oh my Lord I need personality clashes at work like I need a hole in the head.

No matter what I have going on, I try not to be snipey/bitchy, but there are certain females who just do it as part of their M.O.

I'm bitching about it here, because office stress is one of those thongs that can bring on a full-blown migraine.

Keeping fingers crossed.

I didn't hear back from Sandra at Cyberonics today - getting excited and nervous all at once.

Either:
(a) I meet with a surgeon on June 12 to determine if she is able to do the VNS under a local anesthesia, with surgery toward the end of the month, or
(b) I meet with another surgeon on June 12 who is fine with the local anesthesia, and will do the surgery on June 13.

Got an off and on headache in my right temple, but the  pain level isn't constantly as bad as it has been.

Ready for this trip to come to an end...

Just Starting Out

Just starting this blog - got lots of good info on the way - my progress, links to resources - hang in there with me...

Random posts from my old tumblr account

1. Brain Farts

   Brain Farts…hmmmmm….
   Little hiccups that my brain does.
   But given that I think it stinks when they happen…brain farts it is.
   Switching letters or words around, stray pen marks as I write.
   Tiny little annoyances in a relatively smooth verbal life.
   Then there are the bigger ones…
   The headache that is omnipresent in my right temple.
   The “checking out” in a conversation or meeting.
   For that matter, blackouts where I have no idea where I was or what I did.
   Subclinical seizures, complex-partial seizures. The emotional comorbidity. The exhaustion of living with a brain on overdrive.
   Brain Farts.

   
   
    
2. Grrrr.....pain

   Blinding ass headache…feels like some evil gnome is driving an icepick through my right temple.
   Brain Fart…took me 3 minutes to remember the word for icepick.
   Brain Fart…brushing teeth and putting on deodorant…started to put deodorant on toothbrush.
   My mom with Alzheimer’s and I have interesting conversations…most of which we can’t remember.
   Peace y’all.
3.   Pain in temple SPLITTING!!! Not responding to Aleve/Ativan plus the rest of my seizure drugs.
   Sux.
    
4. Busy day, rolled with the craziness, worked thru the pain.
   Scary when I start getting too comfortable with the calm, that I will push the envelope into being TOO chilled out, and that will signal the beginning of the cycle all over again.
    
    
5. Fuzz brained, face semi-numb, overloaded. Feeling out of sync with reality. Basically a lot of subclinical stuff going on.
    
6. Stress at work…trickle-down stress from management specifically…probably not a good thing for seizures. Blocking out a lot of the peripheral crap and writing down the critical crap. Determining that when I clock out at 3:30 this crap will be behind me til I get back to work at 7:00 tomorrow morning.
    
7.  Dr. Appt Tomorrow
   

   Appointment to meet with my neuro tomorrow. Finally got a pill dispenser so I can keep my day and night meds straight, and keep down the frustration of having to open half a dozen bottles at a time. With my memory glitches, that’s a recipe for problems.
   Hopefully she won’t get too mada at me…
8. Good Report

   Saw neuro yesterday. Changed Lamictal dosage. SO glad I respond well to that rx!!!
   Now if pre-menopause just wasn’t rearing its ugly head, I’d probably be OK.
   
   
   
    
9. Evil gnomes hammering on my right temple again!
   It shouldn’t be starting til next week…
   This sux.
   And hurts.

What it is...

Migraines, seizures (both complex-partial as well as subclinical), some things noticeable, some not, which is why I call them "brain farts" - they come off as little slips of memory, little bits of speech that either get turned around or fail to show up at all, blackouts, and if you don't think living with this is exhausting, just ask my family about all the stuff I've missed because I've been too tired to function...

Getting ready for VNS implant surgery sometime in the next month or so. 


That's really it right now for my first post.


I'll pull my stuff across from tumblr later this evening and some of this may make more sense.