Twitching the night away…

Oh beautiful brain wont you stop annoying me, please?  I know what you’re doing seems benign enough, but over a long span of time (read days, months, eventually years) it’s far from it.  I am going out of my (still beautiful) mind!  What?  You didn’t know I wasn’t already crazy?  Well, if you thought before was bad, just give me a few.  🙂

I was sitting in church yesterday and trying to listen to the sermon.  I was.  Girl Scout promise.  My left leg had other ideas.  I pressed down on it with my hand and told it to settle down and quit squirming in church. It continued to ripple and then it jiggled to the side.  I’d already told it before we even left home that I would have no more of this kind of foolish behavior.  Threatening to ground my leg for misbehaving is just ridiculous, so sadly I had no real force to back the threat.

My elbow nudged out not long after and while it’s probably not visible to my fellow church goer, my husband felt it and immediately elbowed me back.  I shoved him harder with the edge of my arm and gave him a “What gives” look.  He’d already warned me to behave today (all in jest of course) and so I’m sure he figured I was joking with him about it as I saw his mock stern “behave in church” look down at me.  I wish I had been joking.  Ugh.

It’s not painful.  It’s just annoying.  So whenever I tell anyone about it, I sorta just feel stupid.  So much of the issues I deal with are pain related… so this should be a welcome side thing – a distraction.  And it is exactly that.  A big – twitchy distraction. For a while in college i used to say something, “made me twitchy” for who knows why.  It was the wording of choice then I suppose.  It meant irritated, frustrated, annoyed, sorta mad.  Well, I guess it still does, but as a wonderfully ironic turn of it, now I get to really BE twitchy, not just – well, yeah, you get the gist of it.

I really dont remember when this silliness began – and it seems to have been this way forever.  I haven’t though.  It’s fairly new.  Last fall I began to take notice of it beyond what seemed normal, cause to some degree everyone does it.  You do… just before you fall asleep… you just don’t notice it because LaLa Land is way too enticing to pay attention to the little foot wiggles and arm wave.  If it was only during sleep – I’d be thrilled!  I am not that lucky.   It happens when I am awake AND asleep – so my body is always in a unperceived bit of motion.  It’s tiring to move all the time and never really stop.  Sorta like how a tub can fill up full of water, one drop at a time, if you leave the stopper in.

Somedays it’s just stupid.  Other days, eh, I can almost forget it’s happening.  Today?  I am just beyond words.  (Though I seem to be finding a few to toss down here…)

Want the inside scoop?  Okay, so here’s the deal.  I promise you – no whining – just “informing” those who wonder specifically what a twitch is, and wonder what it feels like.  For a selfish little side note “PLUS” for telling you – next time you see me throw a hand or foot your way, don’t think a thing about it.  In fact, if you see any part of me move oddly… just assume it’s the goofiness rolling around my veins and trying to escape it’s captor.

Seriously though, it really is odd.  I decided to sit as still as I could and not move a muscle in an effort to explain it better to you, my adoring reader friend, and to amuse myself.  I tried to fully relax and to just let myself melt into the recliner.  No noisy kids about, no music to move to, and no excess thinking.  Just stillness.  If my husband found himself doing this, he’d be asleep and out for an hour easy.  For me, this is when the real fun begins.

First it is just a small ripple.  It may float across my abdomen or upper arm.  Really, it’s sorta like a tickle.  Not the funny “ha ha” kind, but the reaction you get to a light touch…  like skin reacting to the brush of a feather, let’s say.  But the feather isn’t there.  If you can see the feather, you know when the ripple will come.  Without that, it’s all surprise.  And the surprise is what leads to a tad bit of anxiety.  It’s not enough to make me stay home, but I am inclined to spiel you this little run-on explanation if you witness an arm jerk or foot kick.

It moves from the feather-ripple-stage to twitching after being still for about 15-20 minutes.  Twitches are random movements I don’t intend to make.  They dont tickle.  They annoy.  First, a foot hanging slightly off the edge of the recliner will jerk sideways, an arm will contract towards my body, then after a minute or two, muscles in my back sorta do a little spasm and contract making me want to sit up.

Case in point – I was taking a much needed nap one afternoon and I woke from a wonderful missed doze as my arm shot straight out and up.  It jerked me awake and I then had to go through the relaxation routine all over again.  It makes your heart beat fast like jerking awake.  And really, that is the best way to describe it…

Twitching feels a lot like the soft jerk of a knee or arm when you are falling asleep.  Sometimes it feels like the falling-in-your-sleep thing that makes you awake startled.

I’ve talked to doctors, and some have brush me off or told me I have probably have things wrong that I doubt I have.  The Neuro guy I see now is working on it, but it gets complicated because it is really not something new – it’s related to something else.  And from what I hear, there’s not much to do about it.  And, really, I don’t care that there is nothing to do for it… I just want to understand it.  Knowledge is power.  If I know what’s going on, then I will deal with it.  I’ll just make the most of it – and my family can certify that NOW I am officially nuts.

Small extra tangent here – but related to all this rambling… I finally bit the bullet and joined a “Chiari Malformation” Forum.  I just sorta brushed passed it because I didn’t need that place.  I had a very supportive family.  But I did need it.

The one I chose is a place set up to let those who have Chiari’s learn from those who’ve been at this a while, to encourage, to ask questions, to pray for one another, and to share in a good laugh (about throwing arms let’s say) where it’s understood by members simply because it’s part of who we are VS reading info via the web about what doctors “think” it is.  Believe me, there is a difference.

What I found when I posted for the first time was overwhelming support.  I actually got teary.  I asked if anyone had trouble with twitching, or was this yet another issue to deal with.   Immediately I received 11 responses telling tales both funny and frustrating that described everything I’d never said to anyone.  It was like they’d been inside feeling my muscles throw their weight around and putting it into words I still dont have to say.

I know the old saying, “Misery loves company,” but that isn’t it exactly.  It’s more like, “I get you – and you’re gonna be okay.”

I am still self conscious of the twitches.  Unless I am moving, they happen.  I sometimes wonder if people notice.  Then I remind myself that no one really much cares what I look like while sipping a soda on the bench at the local park.  I could get up and do a double jig or whatnot and probably seem sane from some of the park frequenters I’ve seen lately.  The embarrassing thing would be to wave at someone I don’t know and get an odd stare while they figure out that they DON’T, in fact, know me.  But AGAIN, if I don’t know them… I dont much care do I?

Yeah – so we are back to “who cares?”  Mmm – okay.  It’s sorta humbling to realize that the biggest frustration going on with me is one I don’t talk about much and is probably completely missed by nearly everyone… and while I think I care, I guess I don’t.  And yet – still – one more time – I must care because I have bothered to write a ridiculously long blog of 1580 words!  The “all knowing word count” has the last laugh. I DO care, anyway, regardless of whether it makes sense to or not.  Have I confused you completely now?  Yes?  Well, sorry.

Nutshell – I twitch and move.  A lot. So if you see me moving oddly – now you know.  I could have just said that and saved you a heck of a lot of time… but what would the fun have been in that?

Okay – I’m done.  Promise!  🙂

Over and out…

Now – off to bed… it’s time to twitch the night away.


What’s missing?

The other day, my son started talking, and talking, and talking.  Nothing new there, believe my ringing ears, but the conversation itself was.  He was spouting off that when HE has kids, he’s gonna do this, this, and that.  He’s never gonna let them have pop, pizza, or ice cream.  There’d be no computer time, no gaming machines, no junk food, no blah blah blah… then he added that he won’t let them get away with ANYTHING and every time they do something wrong… bamm… they’d always get in trouble.  No if, and’s, or but’s.


I looked at him, and while I knew he was just spouting off, I decided to talk it out.

“What’s the matter with this picture?  What’s missing in your idea?”  I just sat and looked at him.  He has never been treated this way, eats way too much sugar (don’t tell the dentist), and probably should get in trouble way more than he does.

He looked up and put his finger to his lips in a contemplative way that seemed, well, stereotyped.  I figured he’d blown me off and was about to spout some smart remark…but then he turned and said with firmness, “Grace.”

He stopped me cold.  I just looked at him.  It was the answer to my question in one simple word.  I expected a long drawn out conversation… but no, that was it.  He didn’t even elaborate.

We talk about grace a lot in our house – and I guess it sunk in somewhere along the way and he was not able to forget it even when he was goofing off and prattling on and on.

My heart warmed a bit and that’s when I knew that one of the biggest jobs I’d ever have to do had already been done.  I had helped nestle that in his heart… without his knowing it.

“Exactly,”  I said as he smiled at me.  “and does that mean you still want ice cream at bedtime snack, or should I outlaw it?”

“I was just kidding, ya know.”  He brushed me off and started on a new subject.  I had to laugh to myself at that.

Yeah, buddy, and the future Grandma-ME is happy about that.  But what I am happier about is the one word answer that was hidden in his heart that afternoon.  It’s not just the parenting advice here… it’s the bigger Grace that’s been extended to this boy, to me, and to us all, that really made me smile as I watched him from the distance.  That wonderful gift of Grace from God that’s even right now packaged for all the countless children to come, in generations still yet unborn, all waiting for them to unwrap.  A huge gift that is summed up in a single word…

Never heard of this gift… or want to know more?  I’m always around…  I don’t know it all – but I can point you in the right direction.  It’d be my honor!

Fried-day the 13th

A “SHOCKING” new update for you:

Because I am oblivious to the obvious – I only found out it was Friday the 13th AFTER I was laying flat on my back on a table next to what looks like a big battery with jumper cables and a mini stun gun hanging off.  Imagine the look on my face when Tech Girl, a nice enough woman who is educated, well put together, but beyond frazzled, says to me, “So how’s your Friday the 13th going?”  I said we’d see when she was done with me.  I tried to laugh in a small talk kinda way, because when the  woman with electricity has the zapper in hand, you laugh at what THEY think is funny.

I rescheduled an EMG from last Wednesday to today.  When we (meaning me and the phone girl on the other end at the Doctor’s office) agreed to “next Friday at 8 am.”  She never said the date.  I am not superstitious in any way, but still… well it was creepy.

But creepy is just the heebie jeebies.  A tech with a bad day before reaching the office?  THAT is unfortunate.  Laying there it did cross my mind that she could be very unfocused and maybe turn that little dial thingy a bit too high on accident.  But when she insisted on small talk (and really… who can do small talk while being electrocuted and pull off that fake smile and pretend “sure, fine fine… blah blah blah?) I did it anyway.

For whatever reason, I was supposed to be fried today.  I was here for MY test, but somehow, laying on that sterile table with electrodes and wires, and a bazillion watts of electricty buzzing throught my body, I was there for HER.

We did the, “how many kids, names, ages, school, and how long married,” rundown and it ended with, “Wow – you made it 16 years almost?”  Yeah.  I guess so.  I had not thought of it as a big number 16 with massive glowing numbers, but the way this woman said the number, and the way her eyes looked dead and defeated, I thought again.  I went from dreading the next shock to wondering about her.  What was her story?  Before the thought crossed my mind fully, I was listening to her.  It came out of her almost like no one ever heard her.  When she said she didn’t know what she’d do if she didn’t have her career, it was her words and tone that made the next shock bring tears to my eyes, not the voltage she’d upped.  I felt HER pain, not my own.

“Before I even left the house, my husband made sure I knew I’d ruined his day completely.  Did he forget he ruined mine months ago by quitting his job just because he didn’t like it?”  Her words echo’ed in the room.  What do you say to that?  I just quietly laid there and said a soft, “yeah.”  There’s nothing to answer to that.

I lay there jiggling, my body jumping off the table as the small tazer like thingy sent volts through my arm down to the battery top thingy attached to my hand and various electrodes.  My mind wasnt on it at all.  The pain was there, but it didn’t fully register.

My husband works everyday at a job that isn’t probably his favorite, in reality. (that’s being kind)   It’s third shift, it’s dangerous, and it doesn’t pay a whole heck of a lot in the worlds terms.  But it’s a job. A good job.  It has insurance… and in this economy, that alone is working for.

I’m married to a man who will do what it takes to take care of his family.  Most of our married life he has worked several jobs at a time (and never ones that are glorious, and always at bad hours of the day) and none of them are ones he went to school for a “career” for.  But as yucky as that is – we both know that it’s what comes at the end of the day, whatever time that maybe, that really counts.  I am lucky.  I am blessed.  I don’t forget that for a moment.

So while I lay there, listening to a woman I’ve never met before, I prayed for her.  I prayed for her husband, her family, and I thanked God for mine.  Today I felt fried to a crisp in more ways than one.  Lots was going on that I wished was different in life…but in this moment, God chose to use me to be an ear for someone and It felt good to be used.  No matter the circumstances, that is enough to make a bad day good.

So Tech Gal, I am sorry I never knew your name.  But know this… I will keep praying for you.  

While I intended today to be all about me – and my wallowing in self pity – as it turns out – it wasn’t about me at all.  And it never is.  Nope.  Never.  I think those electric currents may have jump started me again for HIM.  

May God bless you this week – I may not know you, but beware – you just got prayed for!  🙂

Electric Irony

I have had a fear of needles since I was just a tiny girl.  I would sit on the doctor’s crunchy papered table with my arms tightly behind my back.  It was my wrongly childish assumption that if doctors or nurses did NOT see my arms, they would forget about shots and finger pokes.  I would fear upcoming appointments so much my mom wouldn’t tell me about them till I had to go.

Fast forward to yesterday.  Ongoing issues with Chiari Malformation and herniated disks in my neck have offered up many chances to over come my fears and face them head on like a “big girl”.  I’ve had many chances over the course of several years to practice not freaking out by doing pregnancy blood tests every month, childbirth with it’s IV’s and epidurals – and just plain ole life offering needs to get poked at checkups and such.  But my ongoing annoying conditions have resulted in MANY needs for trigger point injections, cervical epidurals, and pin point electrocution.

Yep – that’s right, electrocution with crazy needles of torture.

Somehow getting better means living out my worst nightmares in open air – where crying for your mommy would probably be frowned upon.  Ugh…  I don’t want to be a grownup, okay?  I never asked to grow up.  As grown up as I am, it is still hard to walk down the hall after my name is called and not want to turn around and scream NOOOO! like a 4 year old babe.  I wonder…  has anyone ever done that in that infamously sterile smelling hall where everyone wears garb, plastic coated hands, and paper hats?

Yesterday my mom actually was the one to drive me to my injection, and I found it ironic that I was faced with walking away very straight and sure of myself, in a packed room, when they called out my name to go get tortured.  I had to force myself NOT to turn around for one little small finger wave and wish she was allowed to come with me and hold my hand.  Stupid I know.  But I am still a girl inside.  I swear it.

I’ve had several injections, every time they seem like a big deal.  To some people I spose it would be a “whatever” sorta thing…  I’d like to say it’s all routine by now – and by the 7th and 10th round of injections, I would be an old hat – but it just isn’t.

So for the sake of taking you along with me – just cause I feel better not being so alone – here is what they do…  they prep ya like you are having surgery, making you wonder if they do, in fact, remember that they are NOT doing that and that you are very much AWAKE!  Big scanning machines taking real time photos and Xrays or whatnot are constantly scanning so they get the needles in the right place.  This is both conforming and a bit unnerving.

Then they do their thing, saying “a bit of pressure now” and “a little poke and bee sting coming”  with a “remember to breathe” reminder thrown in.  Really?  Do they get the chance to feel that “bee sting” in prep to do this themselves?  I always wonder because it is more like a wasp than a bee.  Just sayin.

Now the last time I had the EMG stunk.  It was for carpel tunnel in both hands, both rated as “severe” and they bypassed all the therapy that they often start with and went straight to the surgery.  I guess I didn’t know that all people didnt cry while cleaning their bathtubs…  anyway, I digress…

The last time it was torture.  They placed several needles up and down my arm and electrified them and measured the time it took the nerves to send messages…  in other words – PAIN – to each other.  This time?  They will do both arms, across the shoulders and back.  They want to measure from fingertip to fingertip, I guess looking to see what is Chiari related and what is due to the herniation?  It’s all a bit foggy because I am clueless to medical jargon thrown at me a zillion miles an hour, and the meds I take make me forget that jargon nearly as fast as I hear it… so I can look it up easily later.  But what I do get is that it is painfully clear that I will NOT like Friday’s appointment.  Ah well…  after it’s over, I will have info and maybe a better direction to go to have things moving forward and onward.  I will be a better person for it later.  Right?  Just humor me here and nod convincingly.

Anyhoo – all this jabber is just to say – I am still alive and kickin – a bit uncomfortably, but the kick may be a bit harder just because it makes me fighting mad sometimes when my weeks go painfully crappy like that.  But hey… what would I be without something to jabber on about?

I dont aim to come off whinny…  but somedays I just feel – well, whinny.  My dad called it wearing your “Poor lil ole Me” shirt.  I have a long sleeve button up shirt on – flannel cause it’s cold again – but it’s hidden underneath.  Obviously.

Thanks for listening… now off with you to do something besides listen to me whine!

Saving for “Hope Day”

If you read the post below this one – you’ve gotten a head start in understanding todays posting.  Drake and I are saving our nickels and dimes together.

This morning he came out of his room with his digital bank he got for Christmas.  It counts the coins as they go in.  He was still in his jammies and breakfast held no interest to him.  I gave up on that and fell in line with where he was at today.  He sent me of to go find any coins that came from the washer, my dresser, and the bottom of my purse.  He brought out all the money he had stashed in his dresser drawer and all the coins in his treasure box.  His sisters even gave him coins left over they said they didn’t “need” anymore.

Then he counted the dollar bills he had and carefully wrote a sticky note of how many there were and added them to the bank, screwing the lid back on.  We now have grand total of $10.04 toward our $30+tax purchase of the precious angel he wants to give me.  A third of the way!  Not bad.  We said we would work towards Mother’s day, but he really wants to give it to me now.  So he earned a dollar for picking up sticks today and he will be hounding me for more ways to earn money, no doubt.  He will pester his dad for money from his pockets, ask to get the coins Dad doesn’t “need” (aka not quarters for the pop machine at work) from his dresser and Coke can full of coins, and he’ll make fast work of this.  He is already looking ahead to Easter and the egg hunt we always have, which often has coins and money vs candy mixed among the eggs.  

This kid of mine is on a mission, and the Angel of Hope means more to me now just seeing  how hard he is willing to work for it – being a kid of just 8 and no means of getting “real” money on his own hasn’t stopped him or even slowed him down.

By today, the moment from last night had passed, and he could have moved on to wanting to save up for Lego guys or whatnot,  but no.  He is saving for my angel and in doing so, is flaming the fire in my heart of hope.  I am warmer inside, less frazzled, and ready to take on the next round of whatever comes my way.  This boy of 8 has really rocked my world.  It’s hard to put into words… but obviously I am trying anyway!  🙂

I am the luckiest Mom today – and I am so blessed.  My cheeks hurt from smiling as I think of Drake and my eyes wont stop watering with tears of gladness.  Thank You God for giving me this beautiful soul to learn from… and as his Dad and I raise him into a man who yearns after YOUR own heart, God, we will try to keep this precious heart in tact and whole.  I will do my best and treasure my time with him in this, the most precious role ever, the one of Mother.


Angels of Hope

I looked down into the watering eyes of my redheaded boy and melted.  “This is what I wanted to get you, but I cant.”  I immediately ceased my mom-talk in my head, and melted.  For a know-it-all, I sure don’t know much.

My parents had taken the kids for two overnights and days, making a mini spring break getaway for our kids.  They’d had their fun, and now it was time to make their way back home.  We met half way at a CrackerBarrel that was off the highway and sat down to dinner together.  I hadn’t been inside this place in years – and memories of sitting with my parents flooded back to me.  Biscuits smothered in dripping honey, chicken and dumplings, and perfect sweet tea.  Mouth watering heaven.

Grandpa threw a couple bucks at each kid and they ran off to the wonderful gift store packed to the gills (and walkways) with treasures to find.  They went off in search of stick candy and flavored old fashioned wax treats.

On the way in, my son had found a little dog that looked like Doogie (our dog) and I knew he’d be wanting it.  He blew off the candy and pouted, as he often tries, in order for someone to feel sorry for him so he could get his way.  I wasn’t caving in today.  It’d been a heck of a day and caving in was not on my list of things I was gonna do today.  It’s a long story, but today was not a day to push me.

To make it worse – I’d had a mini moment on the way up to meet them all.  I was frustrated at the place I am in – waiting – for something to work in my health world so that I could make some headway.  I was tired of being tired.  I was irritated with being a soccer mom who couldn’t drive the soccer mom van.  I would happily be a “stay-at-home-mom” but the key ingredient in being that mom is DRIVING the kids everywhere, going to the store, the errands, school, PTA, and on and on.  The medicine I am on means I cant drive.  I tried this week and GOD took me there and home.  I wont do it again.

For icing on the cake – I spent 2 hours on hold and talking to people who really dont care that our entire tax return was stolen due to fraudulent hacking.  Thousands of dollars are gone and when we asked the time frame for getting it back – we were told there WAS no time frame.  Watch for papers to fill out.  Again.

To put it mildly, I needed an angel of Hope to come down and lift me up.  I was not feeling overly happy or hopeful today.  I just wanted to curl up in a ball and lay there.

So when my son put his hand in mine and begged me to come see the thing he wanted to get, but couldn’t, I finally agreed – but with the understanding I wouldn’t be changing my mind.  I was sure I knew where he was headed.  But I was wrong.  I walked behind him, still holding his hand as he can to stop in front of a collection of angels.  My heart dropped to my feet.  He handed me one very gently, very quietly, as if it were made of glass.

The little angel was holding up a single candle, protecting it’s tiny flame, and as I stood there looking at it, mine flickered in my heart.  I tipped it upside down to find the name.  “Angel of Hope,” it read.  “This is what you wanted to get?”  I asked him gently.  Tears spilled down over his freckles and he nodded yes.  My tears began to flow and I just looked down into the eyes of my precious boy and cried.  I knelt down and he immediately wrapped me in a bear hug around the neck and sat on my knee.  We cried together and I remembered that this journey of mine was affecting us all — more deeply than I knew.  We all needed a bit of hope.

But $30 was a lot of money right now… technically for something we didn’t need… and so I told him we would save up, “together”, for it.  Maybe for Mother’s day?  His smile lit from behind his tears a bit and he nodded.

Just when you think things are just the way they’re gonna be- something comes along and shakes it up.  Nothing is set until God has had His way and say.  There is always hope.  Angels are always just out of sight, and they are seen by the little ones in moments we miss.

So buddy – thanks for the gift, even if I dont have it sitting on my shelf yet.  It already means the world to me.  I am so amazed by you every single day.
Love, Mom