Not a typo.
The sole of the boot that's been up me arse.
I've been pulling a Garbo.
But I'm here now. Ayup. Sorry it's been a while since I posted something new. I've been otherwise occupied. Yeah, yeah, yeah. Everyone gets busy. Sure.
You see, well...I got sick.
Yes, I know, I write about the flu a lot. I'm a mom. It happens. Kids are little petri dishes of woe. Whoa, man.
But this isn't the flu.
Oh! Hey! Where are you going? Fine. Here's another monkey pic:
Happy? Cool. I'm just gonna keep typing so feel free to browse through the other pics. It's easier to open up to strangers about this stuff. You know what I mean? And it's kind of startling and a wake up call/reality check of how small my world really is.
So, here goes.
It's quite the tale. It was the best of times, it was the worst of times...wait...that sounds familiar. Snerk.
Don't worry. I'm not dying. It's nothing as morbid as that, but it's been a suck-ass life changer for sure.
And the pisser? The docs are still juggling diagnoses. Of course they are.
They drop a bomb and then change their minds. Oh...wait...it's another bomb!
First it's this.
And then it's that.
Then it's definitely not this. But wait...it could still be that. Tests show this, but that part looks good. We'll have to watch that -- check back in a year with another MRI. Weeeeeeeeeeee
It started with the not sleeping so well. Insomnia. It's plagued me for years. A writer's best friend...right? Ummm, no.
But it got worse. See pain was waking me up and keeping me up all night. Pain...all over my body. Random spots just deciding they'd be on fire for a few days (or weeks or months). I may have mentioned my hellbow once or twice here. Maybe not. I may have saved that public whining for my Facewall. Cackle™
Anyhoo the pain started becoming a 24/7 thing. Yes. It does make you grumpy when your body hurts. Everywhere. For no reason. I didn't even get to claim an awesome drunk wipeout story for it either.
When I was in my late teens to mid twenties I had migraines. Bad ones. Hooooo.
They went away as I got older. yay! Maturity.
I got regular headaches every once in a while in my thirties -- I could tell the difference. It's easy. You could, too. Do you have a headache? Do you wish you were dead? hahaha. sigh. No? Not a migraine.
Anyway....minor headaches started coming back about a year ago. Pretty much every day I'd have one. Little tension headaches, but always there. Pop a tylenol, see the chiro, it would fade for a day. Sweet!
About twelve weeks (maybe more) ago stuff started getting odd.
Ever have one of those weird muscle cramps? You know the kind where you think perhaps something has found its way up your pant leg and is making its way not-so-stealthily towards your whatevers?
Or the kind of muscle spasm that feels like invisible fingers are just repeatedly poking/shoving/poking/shoving/po---
okay, you get the picture.
The other fun one is the zingy tingles down my arms and legs, and then all of a sudden my legs feel like I've just done a gazillionty-jillion (yes...that is a number) squats. My legs shake when I walk. Sometimes even give out.
Here's a fun one: Gravity wells. What's a gravity well?
These are gravity wells. Little dips and spacial anomalies that trip up your feet, carry your forward progress to the nth degree, tip you sideways if you list even slightly in that direction.
They leave you sprawled on the floor in the thrall of the WTF DIZZIES! OH GOD MAKE IT STOP!!!!!!!It's time I defied gravity...
|Of course you knew I'd go here. I'm in Broadway asshole mode.|
I feel wicked spacey all of the time. The dizzies are one with my wah. Space, man. The final frontier.
Hey! I'm just like Sandra Bullock now. Whatevs.
And the mind numbing fatigue??? Oh. damn.
So I think I'm painting a clear picture -- my muscles are rebelling. That includes my eyeball muscles (you need to say it with a weird speech impediment -- MUSHULLLLSHHH)
The left side of my face will just randomly start twitching, and then it goes numb. Here comes the fun part....my eye goes on a walk about. wah wah wah wahhhhhh....just gives up and points at the floor.
I call it my Colin Hay eye. It's a wonky fucker.
|SEE???? Look at that wanderer!!!!|
My right eye has retinal migraines. No pain. None. Just bizarre twisty colour shows for twenty minutes out of that eye.
Lately, if I look at something even slightly bright, the edges have the rainbows. Other things are a bit bleary, but also with rainbows. All of the time.
And I'm wicked dizzy 24/7.
My voice is gravelly. Sometimes it's an adventure swallowing. Sometimes I have this strange tremor so my head looks like a bobble head.
Bounce. twitch. Shimmy.
Looks like I'm constantly nodding yes when in fact inside my head I'm screaming no, no, NO!!!!!
Don't get me started on the brain fog/word salad.
I am slow. Sometimes I can't even do simple math -- that's humbling. Sometimes I'm quick as whip.
The writing of this blog post occurred over a two day span. Lots of typo editing. Lots of bad grammar editing. LOTS of "WTF was I trying to say there?" editing.
I mix up words very easily. I speak very slowly. Sometimes I slur my words.
You get it. I'm slow.
Before all the eyeball BS started happening, one doc thought it might be fibromyalgia.
Hmmm. Could be.
I'm going to make some enemies now.
I apologize. I want you to know that I do recognize that Fibro is a real syndrome with real issues and real sufferers. I do. Honestly I do.
But *almost every person I know with fibro is such a fuc&#**@ Pus&*$$y about it.
*almost. There are a few friends who have it but don't blame it for the hole in the ozone layer or the invasion of Ukraine.
OH MY GOD!!!!!! Gah!
Uh-oh. That took everything to a new level. The MS level. And transfer to a new MS specialist.
I'm getting ahead of myself. Here's a catch up -- Hop in the way back machine:
Five years ago I had an MRI because I was having some slightly similar issues (that went into remission when I got knocked up! Oh! Hey!).
The scan showed two areas of lesions that were in the right area for MS. Dun, dun, dun, dunnnnnnnnnnnnnn.
My MRI was submitted to an MS clinic for review and just like a posh Ivy League College hoop jumping extravaganza, I was accepted! Oh goodie!
There's that gallows humour to cover the butt pucker terrified.
Symptoms weren't definitive then for a diagnosis of MS, but it was on the radar. They told me to keep an eye on things.
NOW HOP OUT OF THE WAY BACK MACHINE.
Welcome to 2014.
(We now rejoin this blog in progress)
So...when Wonkyfuck eyeball went south...MRI time. Again.
I would have had to go through the whole review process again. Because I was in the middle of a current symptom storm/symptom cluster, I was accepted into a different MS clinic with a shorter waiting list. Instead of six months it was three. But they actually worked me in a month early.
The doc is amazing. I love her.
The good news is that the lesions have "NOT SIGNIFICANTLY GROWN" which is an excellent thing. The new neurologist said that that was good and that it made whatever was going on most likely perhaps not MS. Not definitive. Have to wait a year. There are certain cases of MS that do not have lesion growth but the patient does exhibit significant relapse/remission episodes.
The doc did put that out there.
That's a collective sigh of relief from the peanut gallery. It's been a very scary twelve weeks.
Back to the Doc and her wisdom making.
She said the brain leeeeeesssssiiioooonnnssss could be caused by (use science voice now) ACEPHALGIC MIGRAINES. Basically no-pain migraines that swell up the head noodle, electric storms, mimic TIA's and strokes, and can cause the crazy eyeball wander, face numbness/droop/aphasia/dizziness. Cool. Kind of.
So that's what she's aiming at fixing. It's tangible. Mostly.
She put me on an anti seizure medication. It's hard core and supposed to help with the brain stuff. Maybe. Hopefully.
It hasn't yet.
Of course. Dizziness. yeah.
I'm on other meds for pain and possible Fibro. They've done fuck all.
Because pain??? Oh yes. It's there. A lot.
No definitive reason for the muscle shite yet. Well there is, but MS has been tabled until next year.
As of this week, my left side is on twitch/spasm patrol. The head bobble had mellowed a bit, but it's back with a vengeance. My hands shake like I'm mainlining triple espressos. GRAVITY WELLS!!!!!!
When I have to interact with folks I keep the time to a minimum. I can maintain for about 15 minutes. After that.......oooof. I'm the poster child of drain bamage.
|see? Another funny, distracting monkey pic.|
The longer this goes, the more I think it is MS and I'm just wasting time with other meds. At least the lesions aren't progressing. That's something.
I'm not a doctor. I just play one on TV.
Who knows. I do know that I'm scared. I'm scared for my kids. The last thing I want is for them to have a sick/twitching/addle-brained mom. As it stands I try and hide as much of the major episodes from them as I can.
Needless to say I've been kind of a shut in. I don't want to talk about this and explain this. Fuck that.
It's been hard on darling hubby. Yup. He's a bundle of stress. I feel so bad. But he's been my rock. The kids know something is going on...eldest sproggling is starting to stress. Damn it.
We don't have family close, either. His mom lives back east. His dad in TPRT. My family is gone, gone, gone, baby, oh-so-gone to the great hereafter. My chosen family is close, but brother's got a heaping pile of universe eff uuuuuuu on his plate. Shout out to SIL. Hugs, babe. You're strong. But bro, I'm here for you. Hugs and love and smooshes. Wonder Twin link bingo. Don't channel my twitches anymore!!!!!
I've got FB peeps...but they live elsewhere.
I sound pathetic. And I suppose I'm lashing out at the universe. One friend said, "I know you. You can't hide shit from me. What's going on?" ha. Sermon received, Preacher Dick.
I hang out in my deck office, not-smoking smoking (shhhhhh....I'm quitting), mulling over the scary shit going on in my body and not writing/creating/doing what I'm supposed to be doing. I just can't right now.
So yeah. I'm gonna share with you....my random monkey pic seekers. We're havin' ourselves a LION KING moment.
Can you feel the love tonight???
I'm tired. I'm tired of hurting. And between you and me, oh wonderful random stranger, I'm kind of sad that hubs and I are going through this alone. I've always been tough. I had to depend on only myself growing up, so I got used to being alone, being the outsider, not having a lot of friends. But he needs someone right now that he can vent to.
I have told a few people. It's amazing how friends that you make on the internet can become such a big, important, valued part of your life. But I don't talk about this that much. Everyone has their own stress.
Locally I've told a few folks. But really, what can anyone do? I'm not touchy-feely. I told one person, who I thought was a dear friend when she asked what was going on, and I also told her I'm not making a big deal out of it. I'm not. I'm a private person (except for this blog...but you are all wonderful strangers!).
But this shit is scary.
That friend turned out out to be, well...not a friend.
In fact the folks who I had considered close friends for the last few years, and our other friends for over sixteen years turned out to be total wankers. It was apparently inconvenient to be friends with a sick person. It didn't fit their lifestyle. I learned a very valuable lesson: Friends aren't supposed to make you feel bad.
So I simply shut down and circled the wagons. It's easier than constantly filling out a butthurt report form.
Oh well. If ifs and buts were candy and nuts, we'd all have good christmas now wouldn't we.
So...yeah. There it is. That's why I haven't blogged and supplied you with new pics.
I'm not complaining and this is the last you'll hear about what's going on in twitching monkey land. I'm not going to whine about the hole in the ozone layer, the invasion of Ukraine, or speak again about brain lesions. Well...unless brain lesions are in a horror story context.
Not in my brain. In something else's brain.
The next post will be funnier. I'll write it hopped up on one of my pain meds.