Thursday, November 09, 2017

The straight dope on seizures and...dope.

Like me, I know a lot of you have kids (or other family members) suffering from seizure disorders of one type or another.  Like me, I know you've most likely been prescribed a number of different treatments over the years - switching from tegretol to phenobarb to lamictal and back again, changing doses, checking blood levels. 
Like me, you've still been subjected to seizures either frequent or occasional, whether your patient has been medicated or not.
Some meds work great for epilepsy but not so much for non-specific seizure disorders.  And sometimes the type and symptoms and strength of the seizures changes over the years.

My boy has had seizures all his life - thankfully not TOO frequent - but he always had just as many ON the meds as he did we made a decision several years ago to stop medicating him since it didn't make any difference to the frequency or severity.

The last maybe 3 or 4 years Josh's have been getting a little more frequent but still irregular...sometimes once or twice per month, sometimes once every two months.  It's very unpredictable.  They have gotten more severe though, his body stiffens and locks down and as you know back in June he actually gave himself a compound fracture during a seizure.
Granted, it was a weak spot where it had been cracked in the NICU by a nurse changing his shirt, and it was his "bad" arm (due to the cerebral palsy his right side is weaker and smaller and he doesn't really have any real control).
Plus it's healed all crooked and weird because they feared his bones too brittle to put any plates or screws in. So there's that.


I'm guessing most of you who have to deal with seizures have seen all the 'miracles' happening with Some Kind Of Oil Made From Weed, or Cannabidiol oil.
Like me, if you've heard of it or seen the videos crossing your facebook newsfeed, you've checked it out.
Like me, maybe you were totally confused by all the information.  Hemp oil, CBD oil, with THC, without TCH, what kind of dosage, pills/liquid/vape oil...DOES IT WORK? Which works best? Dosage for an 85lb manbaby? Will I overdose him? Is the OTC kind safe?

There have been a few small studies so far that indicate that while the CBD doesn't completely eliminate seizures in all patients, it does appear to lessen the frequency up to about 40%.
If your kid is one of the kind that has several seizures per day/week/month, 40% is a SIGNIFICANT number.
My expectations and hopes were lower - basically I was just hoping and praying that best case scenario would be to lessen the severity so they weren't as hard on his little body.

So I read and researched and asked & consulted & had friends in MJ-Friendly states ask around at their favorite dispensaries in case YOU are as skeptical about trusting random testimonials as I am.
I will tell you my personal story, since you already know me.

We're using the over-the-counter CBD oil in a suspension of grapeseed oil.  There is NO THC in it.
It is NOT Hemp oil.  You canNOT overdose on it.  Side effects are minimal and reported mostly a little drowsiness, dry mouth and in a few cases, diarrhea. 
Joshua has not had a seizure since he's been taking it...
...for 10 and a half weeks now.
No discernable side effects.
I give him half the recommended dosage, which is one dropperful per day.
Maybe it's still to early to tell whether it's just coincidence or the oil that is helping. I'm open minded.
But he does have "tells" and signs that typically start a day or two before a seizure.
He's had those signs a few times over the past 2 months...but no seizure following.
YES I KNOW I'VE JINXED IT NOW and he'll probably have one today.
If he does, I am hoping it's less severe.

NOW YOU HAVE A TRUSTWORTHY (hahahaha! well, you know I wouldn't mess with you about something as serious as this) TESTIMONIAL.
And I will keep you updated.
I'm thinking of taking this for myself eventually, as it is said to be good for chronic pain, but it is a little pricey at about $36 for a small bottle.

The place we get the oil is The Health Patch  - formerly Nana's Pawpaw Patch - in Midwest City. They have a couple people who've trained in holistic & naturopathic treatments and I can tell you they are VERY patient and thorough in answering questions and printing out info. Super nice, super helpful. (No, this is not an advertisement for them - but I do highly recommend)

Friday, June 30, 2017

Chicken Finger THUNDERDOME: 2 Fingers Enter - Only One Survives

Well, technically none survived.

So yesterday was a tough day on my little family - Joshua had an appointment with the orthopedic dr for his broken arm.
Okay, I know it's JUST a broken arm but for a multiple-disabled, non-communicative kid who is like a 6-9 month old, nothing is ever "just" anything.
Of course it was a little strain on Becca and me (he weighs about 85 lbs) moving him around all day but the worst part was knowing I was hurting him.
Joshua doesn't cry. He fusses, he whines, he hollers, he makes this moaning sound that I DETEST and he knows it, but he hasn't actually cried in about 10-15 years.  Yesterday though, getting him in and out of bed, wheelchairs, and the van...I hurt him a lot moving him.
When I put him in bed last night, he had tears in the corners of his eyes and I wanted to just die.


After the doctor and the tag agency (time to get new tags! Also wtf, THEY charge ME $1.50 to look at my insurance form I had to bring in? WHAT IS THAT ABOUT??)...Becca and I were not ready to go home and begin the unloading process - we were hungry and wanted some comfort food and decided to splurge and eat out.

So there's a Raising Cane's not too far away and then a Zaxby's on the way home, so we thought we'd just do a little Chicken Finger comparison for fun and share our results.
We got the same meal from both places: 4 chicken fingers, texas toast, coleslaw, fries, & each place has their own "secret dipping sauce." OH, and it came with a drink.
Price difference: Zaxby's was 20 cents more on the menu.

As you can see, Zaxby's has the bigger drink but Cane's has a bigger box. (*teehee!*)  Raising Cane's had asked if we wanted ketchup and I said yes, so we got....ONE KETCHUP.  And one napkin. NO.

So here's what we got  - and man, is that a LOT OF FREAKING FOOD.
FIRST THINGS FIRST: The Zaxby's fries were bigger cut (and a bit more generous), but taste-wise the Raising Cane's were much better and cooked more to my liking.  Zaxby's were a little overdone.
SECOND: We both preferred Raising Cane's Texas Toast, athough I have to say that Zaxby's seemed extra buttery as compared to usual.
THIRD: Look at that enormous container of coleslaw from Zaxby's!
But it is an optical illusion, because it is a very shallow bowl and only LOOKS so  much bigger than the smaller-around but deeper container from Cane's.  Cane's was pretty good coleslaw - they claim it's made fresh every day and we saw no reason to doubt that...but flavor-wise the Zaxby's was tastier for both of us.  It reminded me of when KFC used to have that really good, finely chopped coleslaw a long time ago.

Look at that sauce. It almost looks the same and guess what? It almost tastes the same.  Zaxby's (right) seems to be a tiny bit spicier and tomato-ier (or tangier, Becca said).  Basically though, I could barely tell them apart. I call it a saucy draw.

And now the main event - The Chicken Fingers.
Awww, they look sort of like a little chicken yin/yang!
Maybe this is why Zaxby's was 20 cents more, because clearly their chickens have bigger fingers. Also crispier, flavorful crust.  I like the crust a little more well done and dark and crunchy like that.
The lighter crusted, less well-done Raising Cane's fingers were actually pretty flavorless when sans sauce.  They were just meh. Juicy enough but nothing special, basically bland.  Without the sauce, they're no more impressive than frozen chicken fingers you can pop in the microwave.

Although the fries & bread were better at Raising Cane's, the overall taste & size was worth the extra 20 cents at Zaxby's.
OH, and the service was friendly and fine at both, although I feel sorry for the Cane's person having to say HEY HEY HEY IT'S A GREAT DAY to every customer all day long because EW.

As you can see, we wanted to be completely thorough so as to give YOU the best possible answers to help with any dining dilemma you might ever have.


This has been a public service.

Thursday, March 30, 2017

Dinky Ink

I might be having a mid-life crisis but I can't afford a sports car (or any kind of new car, come to think of it) so I think I am about to get

I've always *sort of* thought I might get one someday, but it just hasn't been important enough for me to really think about.  I love looking at other people's tats ( NO REGERTS!) and I've seen some gorgeous work.

I think I'm going to start small though.
Fairly tiny.
Because really I do not like pain and also I have to be able to cover it up so that my mother doesn't see it and call me a slut like she did my sister that time my sister got her tongue pierced when she was 18.

ANYWAY - I have picked out two, and this is going to be my first Tiny Tat (coin not included):

And then depending on how much I cry and/or scream and/or overdramatize the pain, maybe something similar to this in the future, only not on the shoulder (also coin not included):

That one might be too ambitious though. Maybe on my 50th birthday.

Sunday, March 19, 2017

It's not paranoia if they ARE watching you. And not even through the microwave.

My work station is in the corner of what used to be called "The Dining Room" - which is funny because we usually ate in the living room - and I have this nice sunny 3-pane bay window next to me. I keep the shades up to get the natural light, and my view is basically my van, some trees, a bit of the driveway, and a corner of my mom's house next door.

Also I'm like That Old Lady Neighbor who sits by the window and peeks out through lace curtains to see what you might be doing and keep track of your comings and goings.

Not really.
Well, kind of.

Because I look up every time I hear a car in the driveway past my house (it's a horseshoe drive in our little 'compound') because what if it is the UPS or FedEX man and they need a signature and I have to put pants or a shirt on really quickly??
Also I can see part of 15th street outside and I know when the mailman comes.  Since a large part of my business involves the USPS, this is important information to have.


I have mentioned before that I can tell when I've been reading too many detective/espionage books in a row because I start checking for tails every time I leave the house.
I get suspicious if I see the 'same' vehicle too many times making the same turns & lane changes that I do.
But hey, I've been trolling the "president's" twitter feed so YOU DON'T KNOW. IT COULD HAPPEN.

Anyway ANYWAY.

So I'm sitting in my little corner nook, working away, and the back of my neck was prickling.
Usually I put this down to peri-menopausal hot flashes but my head wasn't drenched in sweat so I knew that wasn't it.
I turned my head to the right and glanced over my shoulder...

I mean I'd seen a hawk sitting on my mom's back fence a couple of times so I guess he lives in the area - which, I might add, is ripe with big fat squirrels for the pickin', surrounded as we are by trees and trees and trees.

I slooooowly turned my chair and tried to zoom in a little...


I thought I'd creep over to the window that has no screen and get a better shot...

Y'all this guy is YUUUGE - I must've spooked him because right after I snapped this he flew toward my backyard and I swear his wingspan is as big as mine.  He landed on my patio rail so I was sneaking into my room because I'd have had a straight on clear shot out of my bedroom window but as soon as I brought the camera up he flew off again.


I'm onto you now, mister.

Monday, February 13, 2017

Happy 22nd birthday! The age of no particular significance.

Every year before I revise and repost, I remember. I relive. And even if it's just for one shining day, these memories make everything else fall away: all the petty irritations and frustrations, the dislikes and grudgy feelings...all of the things that, in the long run of life, aren't worth the importance we place on them. 

It's been a long tough journey that has passed in the blink of an eye.


Seriously, 22? How is that even possible? Just yesterday they were like...13 -- and some days they still act like they are.

My teeny-weenie micro-preemie 1 lb babies. ONE. POUND. I know, right??


THE DUE DATE: June 4th
THE BIRTH DATE: February 13th. Preemies for pre-valentine's day.
These children clearly get their lack of patience from me.  They were born at 24 weeks, or about 3 and 1/2 months early. They weighed just over 1 lb. each, and were about a foot long. I'm talkin' teeeeeny tiny. Micro-preemie, I think is what they are called now.

Anyway, this is my boy, at about a month old:

I woke up the morning of February 12th, headed for the bathroom, and after about 5 minutes I called out to the baby daddy, "Either I've lost all control of my body functions or my water broke".
I'll give you a hint - my functions were still under my control.
So natch we rushed to the hospital, where the stupid ass snot face condescending nurse (actually I love nurses in general, but this one? NOT SO MUCH) had me lay on a gurney for an hour and then said that I was fine, no fluid was "leaking" (I know, gross), and the pains in my back and belly were just muscles stretching, NOT CONTRACTIONS...and then she tried to send us home. 
Me being me, I caused a scene.
Hey, guess who ended up being right about me being in labor?

Here is my little girl, at about a month old:

The doctors tried to stop my labor for 24 hours, but apparently my kids were having none of that. On the 13th of February, my boy arrived in the usual way - of course, I was knocked out for the entire thing. My daughter was still safe and secure in her bedwomb -- the idea was to let her 'cook' a little longer (which would have been weird to have twins with different birthdays, right?).  So they were wheeling me into recovery when Miss Contrary's heart rate dropped to zero, and they did a SUPERFAST emergency C-Section to get her out. Evidently she didn't like being alone.
So it was like Twins Two Ways, with extra Mommy Staples.
This is also where I discovered my love of morphine. MMMMMMORPHINE.

Their ears were still folded down (WEIRD! I didn't even know ears did that until my kids were born. It was like puppy ears or something), and their lungs were not completely developed, and their little hearts were working overtime/doubletime.

They struggled for every single breath. They fought to live.

And so they did. And so they have.
Thank you, God.

Thank you for this little miracle....(my girl at about 2 months)

and this little miracle...(my boy at about 3 1/2 months)

The doctors gave them less than a 50% chance of survival.
Fortunately they got my stubborn genes as well as my temperamental ones, because my kids wouldn't listen to percentages; they went all HAN SOLO and were like NEVER TELL ME THE ODDS!

Their hearts were overworked, their lungs were and are covered in scar tissue, they are cursed with keloid scars as well as scars from perc lines and picc lines and a million little junkie scars on arms and feet from being pricked with lancets every hour. They have scarred veins, they had damaging bleeding in their brains, preventing brain growth. And yet...    

Becca's first day home from the hospital! Nearly 4 months old and not even 5 lbs. I still have this amazingly tiny dress - I swear it's barely bigger than Barbie size. Those booties she has on? The foot part is less than 2 inches long. Each twin came home attached to oxygen and an apnea monitor - whenever we all went anywhere together it looked as though we were leaving home for a month, so laden were we with electronic equipment, oxygen tanks, diaper bags, strollers...which is partly why I became the hermit I am today. #Lazy

Here they're about 7 or 8 months old, I think (did I ever mention that I am TERRIBLE about labeling pictures? Because I am). Clearly Becca was already trying to wear some sort of tiara:

One morning I discovered that my daughter knew how to climb into her brother's crib.

When Becca was about two, this is what "Go get ready for bed" meant:

Josh had the softest, wispiest hair so I let it grow and grow... until that time I gave him a buzz-cut and he's been sporting a Greg Brady WhiteBoy 'Fro ever since. Unless I cut it myself, in which case he looks sort of like he's got the mange. #TrueStory

Josh 2007

Becca 2007

There were middle-of-the-night phone calls with doctors on the other end of the line telling me that they didn't think THIS twin or THAT twin would make it through the night- so we'd rush to the hospital to sit and put our hands in the "baby terrarium", as I thought of them, and listen to the beeps and the whooshing of the ventilator and wait for the inevitable.
There were six months in the NICU and 3 or 4 Thanksgivings and Christmases spent in the hospital. For awhile I thought they were going to name a wing of the children's ward after us, or at least keep "our" room in reserve.

There was RSV and BPD and ROP and a bunch of other things with initials that I barely understood.
There was double hernia surgery and laser eye surgery and surgery to correct crossed eyes. 
There were staph infections and even a broken arm that was caused by changing my son's shirt whilst in the NICU - he of the tiny little brittle bones. There were breathing treatments and nebulizers and oxygen tanks and albuteral and lasix and digoxin and tegretol and synthroid and constantly changing medications and frequent seizures and paralyzing fear (well, that last thing was *me*).

I remember a tiny Becca setting her pacifier down in something that had spilled...she picked it up, took a suck, and said, "What the hell is all over this?!" It made me laugh so much that I couldn't even correct her.

I remember one single sentence of absolutely clear speech from Joshua in 21 years...he was sick and angry and yelled, "I WANT MY BOTTLE!"  It was astounding and amazing and thank goodness my mother witnessed it or I would have thought my ears were playing tricks on me.

(or The One Where Joshua Gives Duckface)

This milestone is especially important for Joshua, as he has already outlived all early predictions of life-span. Though it's a little like living under the Sword of Damocles, we do not give in or give up. And despite the fact that they were and are so fragile health-wise, for the last 10-12 years I can count on one hand the number of times they've had to go to the doctor or hospital. 

And now HAPPY 22nd BIRTHDAY!
(YES, Winnie The Pooh is still on the walls. Joshua loves Pooh bear)

How could I not believe in miracles? When I look upon those miracles every day of my life.
I love you, my babies. I have been and will always be thankful for every breath that you take, every blink of your eyes, every morning that you wake. I love you with everything inside me.

You still make me laugh, you still make me cry, you still make me want to smack you upside your silly little heads.

If all the world was a beach, I would love you more than all the grains of sand added together. Times infinity.

Monday, January 23, 2017

Lost In Translation II

When I said: "Agree to disagree."
What I meant: "You are still SO VERY WRONG but I'm bored of you now."

When I said: "Have a blissful day!"
What I meant: "Ignorance is bliss and you are a ginormous ignorant assclam."

When I said: "I can't even!"
What I meant: "I'm fixin' to cut a bitch."

When I said: "Of COURSE it's not about you!"
What I meant: "Of COURSE it's about you!"

When I said: "I HATE EVERYONE."
What I meant: "I HATE EVERYONE."

If I made crayons, they would be named "Depression Blue" and "Hot Flash Red" and "Bitter Envy Green."

One thing Nicole and I discovered on our Haunted Road Trip Adventure is that NO TOWN is too small for Dollar General. No, srsly.

Thursday, January 19, 2017

The Haunting: A Very Very Very Very Long Mostly Pictorial Account of Adventures

The good news for some of you is this: there are many pictures and few words. That way you'll be sure to understand and follow along.

I am ashamed to say that I am JUST NOW sharing the events from October!
My partner in ComicCon crime, Nicole, and I decided since the object of our stalking affection - one Mr. Bruce Campbell - had to cancel his Tulsa ComicCon appearance this year, that we would try something new for your (and our) entertainment.
Of course MY boyfriend James Marsters is still scheduled to appear, but WTF NO VIP ACCESS?? That means no special treatment, no first in line for a make out session photo, no first access to his panel where I could sit in the front row...I would've had to push, stab, maim, kill, fight my way through the whoreds hordes of women and JUST NOT ONLY NO BUT HELL NO BECAUSE PEOPLE.

Plus we were ready to try something new, as our rare weekend away is sacred to us.

So without further fanfare or ado, I give you...


Since it was Halloween weekend, and since we invariably end up in cemeteries even in the midst of conventions, we would visit 'abandoned ghost towns' and 'haunted locations' and graveyards.

As always, it's hard to tear myself away from my precious babies! Thank goodness it only happens once or twice a year.
It's okay my darlings, mummy will be back the day after tomorrow! Be strong, my little troopers! (Normally I would insert a picture of my leave-taking here, but I was in such a hurry to leave so sad to leave it was just unbearable, so you'll have to make do with this)

WE SO ORGANIZED! We had an official Binder and everything:

We carefully plotted and planned our route to maximize the experience - with options to change due to time constraints (oversleeping, short fall days, etc):


We blame Siri. He rerouted us in some big circle three times through the same three towns, none of which were the towns we were looking for.

But I'm getting ahead of myself.
First stop: The Haunted Circus Ground (Gandini's Circus) in Edmond OK.  We drove up & down the same 2 miles of road about eleventy-five times before we saw the "hidden" entrance. We tried to park in an office complex a block away and sneak through the woods, but eventually were thwarted by a ravine. Luckily it only took us 3 hours or so to find our way back through the 100 feet of woods to the parking lot.

It's okay though, we found berries so we wouldn't starve:

This was probably some sort of burial mound, judging by the smell. We did not explore it thoroughly.

Safely back at the car, we decided we'd boldly pull into the driveway which would lead us to the haunted, abandoned circus ground. AND SUCCESS! Except for the No Trespassing signs everywhere and busy offices directly across the street that were prolly WATCHING OUR EVERY MOVE. Yes, I'm afraid we are cowardly ghost hunters and also somewhat paranoid.  We went to see what we could see whilst keeping the car in sight, since we din't have bail money for the car if it got towed.
First the crop circle.
And then the partial corner of a Circus barn.

We also found an awesome portal in the woods:

Which was apparently some sort of wormhole because we ended up possibly in London for a minute:

**Let me just take this opportunity to say that we should've called this trip MYTHBUSTERS, because most of the "uninhabited/mostly uninhabited ghost towns" were definitely HABITED. Even the houses that looked as though they should be abandoned, weren't. So if you want to visit ghost towns and you get your info from AbandonedOklahoma...yeah, no. They are way off base.

We didn't fully explore the few truly abandoned houses we found because either the weeds were head-high and hiding padlocked fences or because there were neighbors...who all had Trump/Pence signs in their yards so we decided discretion was the better part of valor. The Dueling Banjos we heard in the background really was the deciding factor.

Like this house in Bridgeport - we stopped for photos and THEN A DOG and MEAN OLD FIST-SHAKING LADY appeared! We hauled.

Some places took at least 4 u-turns because *RIIIIIGHT* where we needed to know where to go...there was NO SIGNAL and we lost Siri in a tiny little dead spot

. And sometimes we didn't even know if we'd made it to our actual destination or just happened upon some other abandoned place with no name.

TRIVIA: Our loud car singing convinced us that we should probably each start a band when we got home, and what we saw In The Wild inspired our band names. Nicole will be in The Exploding Skunks and I will have The Suicidal Butterflies.

We did find some great graffiti here and there - I think that guy thought we were stalking him. MAYBE WE WERE.

Lots of excellent graffiti on this "haunted bridge," where supposedly a spirit roams after she jumped to her death.
1. You *could* kill yourself jumping off this bridge, but I'd bet most people who try it would just end up considerably broken but alive.
2. They definitely have strong opinions and feelings for Harambe
3. Penis

No spirit encounters, unfortunately, although I *DID* try to capture an EVP.
Did not happen.  Also, it was cold and windy and 10 miles from a bathroom and I almost peed myself. #TRIVIA

Then we headed down south to the "haunted" Parallel Forest, which was pretty neat - it's a cedar forest and all the trees were originally planted exactly 6 feet apart. It's pretty still inside the forest but you can hear the wind whooshing through the tops of the trees, and they creak and groan as they sway in the wind, so I can imagine it would be pretty creepy around dusk.
There's allegedly a river flowing down in there somewhere with a flat "altar" rock where "satanic rituals have been performed, but we never saw it.
Probably because 10 minutes after we got there it was all PEOPLEY. With teenagers EW. and they were throwing rocks at trees. And by the entrance there was this whole photography setup thingy because some family was having their portraits done.

This guy was all I GROW WHERE I WANT. #MyFavorite

Also we didn't stay long because once again - you guessed it - no bathrooms for MILES.
**TRAVEL TIP: If you've had a couple-few kids and now you're getting old, wear Depends or something because you have to pee ALL THE TIME. #OldBladdersMakeExploringHard

We visited a few more little "abandoned"/not actually abandoned towns and took some quick photos, often under the suspicious gazes of neighbors.

They're really quite peaceful and lovely - truthfully some of the people we saw in the "ghost" towns were way more frightening than anything you could ever find in a graveyard.

My 18th birthday:

Is MARG STILL ALIVE?? Was she buried in the wrong place? WHERE IS THE FINAL DATE? WHERE IS MARGORIE?? #Mystery

From Sacred Heart Mission - in the segregated cemetery.

"Here lies an old Union Soldier." #RIP

Random abandoned place on some state highway near nowhere and somewhere else:

And they were SO SERIOUS about NO TRESPASSING! They will give you the boot, mister!

Then we went to cotton-pickin' LOVELAND, which was not at all what we thought :(

...except for the actual cotton pickin'. #BreakinTheLaw #rebels #RoadsideCottonPickin #NoBollWeevils

Okay so this right here was a town. No really. I wish I had a better picture but this was it. A big long building with like a diner/general store next to a fenced in "Weekly Auction" place. Apparently this was the place to be on a Saturday evening. It actually looks like a dead end until you notice the state highway shooting off to the side, nearly hidden until you circle

AAAND of course some Fun With Googly Eyes at the hotel.

Jesus is watching you.

Booo! Time to head back home. I has a sad.

It's going to be EPIC.
Well, epic for us.
shut up.

If you're weird and want to see the rest of the (FAFILLION) photos I took on the trip, they're in a facebook album.