Today, I celebrated 9 months without any seizures.
One of the tricks I like to use, to keep me going, is using a reward for each month, called a squeaky pig, which has consisted of a copy of Winnie the Pooh's adventures in Latin- AKA Winnie Ille Pu (complete with original illustrations, which is lovely for learning verb tenses... "he climbed and he climbed, and he climbed...") Sometimes, it's helpful to ask for help. Sometimes, you need to kick your own butt. And sometimes, you need to give yourself encouragement.
My treatment plan since January has consisted of medication and the keto diet. This has been tough, because I've always had a sweet tooth. (I have tried a sip of soda here and there-and 7 Up, after a small procedure to correct issues with my jaw- injuries during seizures had left it off kilter, and grinding my teeth had left me a few broken ones. I spent about a week after on soft foods. It is a weird experience-at first, and yet, I find that I'm not as tempted to cheat, because I feel better- and sodas and sugary things can taste ODD when you're not used to them. But, I've been craving a candy bar for a while.Luckily, I came across Mystic Monk Snickering Monk Candy Bar.
I received my bag of coffee beans just yesterday, and had to restrain myself so I could taste test to celebrate being nine months entirely seizure free, (75% of my goal to be one year seizure free... DONE!)
It is not overly sweet, but is absolutely reminiscent of a Snickers bar. It is absolutely marvelous, and I am over the moon and doing my best to save the beans for celebratory reasons. My usual coffee has become Marley Coffee's One Love blend, which is also marvelous. I highly recommend the beautiful blends from Mystic Monk. If you'd like some lovely, smooth coffee with that hint of chocolate, caramel, and peanuts, act now, because it will be gone at the end of the end of October- to be back next year. They've definitely made a returning customer. Warning: Does contain essences of peanuts. Five stars! *****
I'm getting into a party mood.
Not just because today is Darwin's birthday.
(Growth and change, fuck yeah!)
This is here because there's nothing nicer than an affectionate parody of "ch-ch-ch-changes".
I've also had some RESULTS!
(I'm excited, it's been such a long time.)
Proper diagnosis in hand... check
Started keto as an experiment. Once you get used to it, it's not so weird. Especially during Lent.
I can still have apples and almond butter for breakfast or for a snack. I still treated myself for Mardis Gras.
And? Fewer headaches, seizures not so bad, a month in, and I'm feeling better than I have in a while.
I've been quiet over the last 3 weeks. I needed it. I came down with a nice virus that also brought along hives to the party and was stuck in bed for four days (It would have been more, but I go slightly bonkers somewhere close to the 24 hour mark of illness. I "behaved" as long as I could because I couldn't move very well and I'd promised a few friends that I'd TRY to rest. I'm still experiencing nerve pain, but don't look or feel like I've sat in a beehive anymore. And the fever broke and I can exercise again. Without going into a chorus of my new opera, "Chimpanzee Stepping into a Hot Bath in A Major" (The lyrics are, oooh, ahhh, ahhhh...eeee...) when I step or sit after.
Or shower, in which case, I entertained my neighbor through the shared wall between our bathrooms, with a tortured rendition of a castrati singing Ave Maria. (Followed by "Where is the benandryl? Oh, gods of benadryl, I can't even sit right now, it's 4AM, and why are you doing this to me?")
Rest and quiet seem to have done me well.
Did homework, listened to a lot of Cheech and Chong, read a few hilariously horrible Regency romances (And the Fat Prince married the extremely boobilicious Caroline, and they lived miserably ever after, he with his hair curlers and mind altering drugs, and she with her boobs.)
So, basically, I'm feeling good, mostly, I'm recovering faster, the macros aren't so difficult anymore. I could even put in a smoothie, but don't want to go out in the snow again today.
I'm working on other things. Like not giving myself the Torturer's Litany, the laundry list of horrible things I've been told. It's not true in the brightness of day, and it's not true in the black of night.
I'm trying to focus on me and not on other peoples' crazy.
There is a lot of it, but I've got my own.
I even put in more research regarding epilepsy awareness.
Advocacy and awareness tend to follow this tired ol' pattern nowadays:
"You have X and I am put down by the patriarchy!"
So, here's my try:
Check your car privilege! Look at you and your wheels and your convenience. What have I got from epilepsy? A need to walk and tighter glutes! Maaaan!
See, it doesn't look any less stupid no matter who does it. Get off and do some actual advocacy rather than putting people down because they're different/ believe/disbelieve in something you don't/ do.
I realize of course, that I've put myself in a trap because I don't like people who do those things and I'm doing it.
AHEM: *Trigger Warning!
I am not going to be able to do this without snark.
Because I am angry. Because gallows humor seems especially necessary.
Epilepsy: It's been a time for change for a long time. TOO long.
Oh, there's gratitude that it's better than it used to be. I'm not a babbling mess in some dark insane asylum, waiting for Geraldo to come galloping in with his cameras.
But doctors have phoned in treatment, it's all about symptom suppression.
And NOW, we're finally getting news flashes that now, now!- we've had too many deaths from epilepsy.
Well, hallelujah.We've all seen the "functioning" person with epilepsy. We also have our fair share of deaths far too close to home. The trauma of searching, doubting, of being left in a hospital hallway, (I can't be the only patient who has fantastic nightmare fodder.) of missing out on life.. pales in comparison to a child who was the classic "miracle" baby, the child his mother never thought she'd be able to have, dying of a seizure around his second birthday. After he'd already fought to survive that long.
Not only sad... it's painful, and it's been half a decade now. We don't need more awareness, or maybe we do, but we also need action.
This is the last of the seriousness.
Susan G. Komen has good press and bad business models.
Let's take a cue from successful campaigns...
We need Sarah MacLaughlin or Willy Nelson. Preferably both.
Dolly Parton singing her cover of Stairway to Heaven might also hit the spot.
Most charities spend the major buckaroonies on overhead, on glossy ads, on CEOs' salaries.
Epilepsy has walks, but most campaigns are grassroot efforts. We need to go big. For more money, per hour of research, I would happily sit in a cage and perform puppy eyes.
DO SOMETHING!
Oh, those SPCA ads are positively dreadful pieces of woo, I tear up every time. Maybe what we need is catchy music and visuals of functioning and malfunctioning in stark, painful contrast. Money , care, research, the willingness to change, to improve, to grow. That's the first step to fixing a situation.
We cannot ignore needless deaths, needless traumas. Not when we can do more than monitor and medicate, to dig around in gray matter. Something's gotta give.
Slogans help us recognize product-
"I'd like to buy the world a Coke®™" (and keep it com-pa-ny!)
NBC has its rainbow peacock.
Breast cancer has its pink wash and its forgetting that it's not just pretty pink and it's not all sexy. (Men get breast cancer, too!)
Breast cancer isn't just pink chicken boxes and tshirts.
NoH8 has duct tape and face paint.
Epilepsy gets... Rehashed slogans.
Purple boxing gloves (Mama said, "knock you out!"- with love to LL Cool J. ❤️)
But... The memes could be applied generically.
I was inspired by the Pinterest bible. Where inspirational slogans like "Be Balaam's ass, not an ass" are superimposed over a beautiful sunset.
Insert slogan here! Freebie!
Let's be original.
"Inspirational" can be a dirty word now. Let's try joyful, silly, original. It's ok to be anxious, comes with the territory.
Fight for your right to party. It's not what makes "others" comfortable, but gets your fight going. Fear is natural. But gut keeps us alive and keeps us working for our health, safety, and freedom. Let's break those records and fight against our fears. Let's be original. Let's not worry that we might not be inspiring. It's we, ourselves, that we need to inspire.
There's strange attitude that comes along with illnesses:
1) Be afraid! RUNAWAY! Everything is scary. Ack!
2) Be a little angel... Seriously. Think of Delores Umbridge from Harry Potter. Not the evil thing- that sickeningly sweet attitude. Ack. It makes my teeth hurt.
Coincidentally, the Latin words for pain or grief is dolôr or dolour.
Ick. I'm not your angel, sweetie. I misbehave, I get downright cranky. I can do a marvelous impression of a rabid tiger with an ear infection.
3) You don't get to be impolite. Please, thank you's. It's ok - there are off days. Don't let people treat you like crap for them. This is where it's fine to say, "dude. You're behaving like a dick."
And finally:
4)Look at how far we've come.
This is a favorite (and perhaps mildly disgusting) article on the blood of gladiators being used as a treatment for epilepsy.
I do believe that this falls under the category of "sympathetic magic":
I did like the idea of sleeping with a strong man. That I occasionally see a Roman breast plate and uh, swoon, is not relevant here.
Eating the heart of a black donkey outside under a full moon. No cooking method specified; I'm going to assume that it's in the style of Kevin Costner in Dances With Wolves after the deer hunt.
Gladiator blood.
Sleeping with a strong man. None of these are as interesting as Pliny the Elder's recipes for incontinence.
People are finally getting that forcing open a mouth that's clenched tightly and forcing objects into the mouth to avoid swallowing the tongue- seriously, try it. It's impossible- is a terrible idea.
What I'm saying is: we've come far.
While the epilepsy research gets less than a penny per hour, new tools are appearing. New attitudes. With them, why not change what we expect from patients? No more running away from everything.
The holidays are coming.
Strobey Halloween parties are over. But blinky lights are OUT there. Be aware, be safe, and keep sunglasses ready. Photo sensitivity doesn't affect everyone. Nor does it bother any two people the same way.
But holiday stress is a danger.
I don't like using these words anymore- (self care) they've been hijacked by a really... Odd crowd.
But take care of yourself, and sit if you can, take up exercises you can do indoors. Exercise can be fantastic. For both preventing illness, and recovery from illness. So can sitting and resting when you need it. And nutrition. Make sure you eat properly.
The list of pickle puns goes on... :-) The pickle and the pepper went out to sea in a beautiful, pea-green Mason jar...
Seizures can and will act like a case of cystic acne on prom night, which... notes for Alanis Morrisette, is a lot of things:
1) A terrible coincidence
2)Positively annoying
3)Frustrating, when you know bloody well that you've got this thing... and can't do it right now, and kind of feel... imprisonedagain.
Butnot bloody irony.
I'm well versed on my triggers. Are there signs and auras ahead of time? Once again, this is different for everyone, and not a perfect science, but some signs have shown up enough times to be a good clue that something is rotten in the State of the Beth. 1)Walking and tripping over my own twofeet. Seriously, it's not all that comfortable, either. 2)My "Bethy, Bethy, Quite Contrary" mode. I'm usually pretty easy-going, sometimes to a fault, and have a bad habit of responding, "Ohhhh... suuure!" to things like dealing with the unpleasant, etc. Here, I become unpleasant, even for myself, which leads, quite wonderfully, to exchanges like, "Beth, aren't you going to buy hummus and cucumbers this week?" "I hate Wegmans, I wanna go home, and I hate cucumbers." Imagine this in a vaguely tipsy tone. So a pretty good way to tell if I'm just being a giant klutz, (if you have a wall, I've probably bumped into it, sleepily apologized to it, and wished it a good morning. See also trees... I have a tendency to be a tree hugger, partially because I'm trying to avoid walking into it unaware.) is "Do you like cucumbers?" It's quite a lovely, pickle-y, cucumbery conundrum. 3)Sleepier and a lot less cooperative. I never like to say the word, "can't"- my father treated it worse than swearing. I might find myself sounding like a kid who doesn't want to do their multiplication tables... irritating myself in the process. (I was taught to be a nice young lady--- sometimes, avoiding that can be good for me! But heavens, I was taught to be stubborn, too!) 4)Confusion of the sort that leads to tears and apologies. 5)I kind of end up wondering, "Why would these people want to be around Fitsy* McGee? *Note: "Fit" and associated terms are on a list of unacceptable terms. Then again, so is "epileptic" in the "Person First" nomenclature. This is hard to find in the spur of the moment. The biggest issue is not a love for gallows humor, it's that every day, strange new language seeps in, and the appropriate language ends up being hidden under "You can't say thats" and "Why would you discuss" and "Is there really so much to laugh at? I mean, do you take this seriously, at all?'s". The answers are: 1)I have to 2)Silence kills 3)Yes. Not if I can help it. If I'm going to run in the free air, I'm going to have to leave a few things behind- shame, what people expect me to be, to make them comfortable. Also, this apologizing thing. Sorry, not sorry.
Section I:Get up, get out.
IA:The Ramones: Blitzkrieg Bop
Insert your own syntax here = )
Hey, ho! Let's go!
Hey! Ho! Let's go! = )
IB: The Gorrillaz: Feel Good, Inc. It gets your fingers snapping and lets you prep for a lousy day. IC:Barleyjuice: Pour That Whiskey In the drinkin' song tradition, makes you move, gets you smiling. ID: Salt 'n' Pepper: Push It Oh, yeah... = )
Section II: Moves Your Butt: II A:LL Cool J: Mama Said, 'Knock You Out'. Gets your fighting spirit moving. II B: The Young Dubliners: Tell Me Ma: "She is courting 1, 2, 3..." tap those tootsies. Another classic drinkin' song. II C: Toni Basil, Mickey. It takes you by the heart and it takes you by the hand. II D: Tony Bennett and Lady Ga Ga: "Lady Is a Tramp" The classics are classics for a reason.
Section III: The Covers IIIA: Weird Al- "Ricky" It's adorable and works fantastically with the original IIIB: The History Teachers. Almost everything. (There's some that just don't work for me... it's at 2 out of about 100. So they have a 98% success rate with me.) Their take on Catherine the Great is based on Poker Face and makes you move. I also adore their take on Beowulf, based on 99 Luftballoons by Nena and contains actual vintage Scandinavian texts. (It also soothes the gaping wound left behind by the season finale of Vikings on the History Channel.)
