Neurology's Funny 'Til It's Not - ramblings about my son's concussion

My son has a concussion.

Know how?

Laughing.  That's how.  Apparently, someone said something funny on the bus + he laughed so hard that he threw his head backwards + the steel beam that borders the glass windows = concussion.

This happened about 4 weeks ago and he hasn't really seen a whole lot of improvement in the headaches, the emotional roller coaster rides, the confusion, even the slight measure of pseudobulbar tears.

Wait.

Can we call it pseudobulbar if he doesn't also experience the intermittent laughter that us MSers know so well?  Meh.  Maybe not.  Maybe it's just 'tears with no label'.

I dislike labels anyway.

As I sat and watched him complete a neurological exam - much like those I did, faithfully, every 6 months...until my doctor retired and I decided I would also retire from those appointments - I got teary.

I remembered his early years and alllllll he'd been through.  The horrible prognosis he was born with.  Didn't help that he sustained a head injury after that prognosis.  Helped even less that he had an allergic reaction which produced seizures and neurological short circuits and, eventually, lots of labels.

The therapies were intense.  The endless 'social stories' exhausted him.  But, by God's grace, years of his relentless work, and a pediatrician in disbelief...those labels were removed from his chart.

My inner voice said, "this is not that...this is just a concussion...and he's fine...so stop it."

But I couldn't *not* see his much younger face as he looked to me for approval immediately following each trick the doctor asked him to perform.  Those glances helped me to exchange misplaced emotion for...the game face.  He's no stranger to being asked to perform tricks to show his brain function, just as none of us in this forum are.  He was prepared to do whatever she asked of him and to follow it up with a casual "did I kick that in the face or what!" approval seeking glance toward me.  Until he didn't kick it in the face.  The dreaded "heel/toe walk down the hallway with your eyes closed" trick got the better of him.

:::thud:::

"I'm okay!"

Yeah, he was okay.  But he was also kinda scared.  Because this faulty neurology serves as a reminder to him of yesteryear.  I figure that's what prompted him to ask me - straight up - if this means he's going to end up back where he was, having to go through therapies?  And, if so, will this time be different?

My answer:  I don't know what this is gonna look like, but God does.

So what's a mother to do when there's nothing she actually can do?  At least until his headaches subside?  And while the team of folks who helped him years ago aren't even in the country at this time, but will see him as soon as they return?

Pray.  Pray and wait on the Lord, because there's always something going on around us that's got His name all over it...if I just stop. and. look.

What have I noticed in my day to day musings?

Well, I've noticed that my son has been given something far more valuable than the information from the classes he's missing, the competition in the sports he's having to put on hold, and the fun of the video games he's experiencing withdrawal from.  He's feeling the blessing of real, true friendship and support.  Like how a friend will just...sit with you.  Because sometimes it's not about having all the right words.  Sometimes? It's just about...sitting with you.  So that you know they're there.  In your best of spirits or your downright worst.  No matter what.

That is how this time is different.  

Thank You, Lord.  I see what You did there.

...and maybe the neatest part is, so does he ;-)

There's No Crying Over Snow

When you're me?  This?

Exhausts you just to look at it.  And it makes you feel defeated before you've even finished your coffee.  Because come on, I know what this will feel like by the time I'm done clearing it.

And all of that?  Put a lump in the back of my throat.

Clutching my coffee mug as if it would somehow hug me back, I told myself that I had to get to work.  Stop it.  Go get some arctic wear on.  Get that mountain off the car.  And get there.

Winter has always been a little more difficult for me, ms-wise, than summer.  While both extremes are less than optimal, summer seems to be more of an "I could sleep. Forever" feel, whereas winter is a "stabby-pain-that-causes-you-to-jump, heightened tremors, and a double side order of visual disturbance and vibrations".

Anyway.

I was right.  Cleaning the car off wiped me out.  As all 5'1" of me pushed and dragged a shop broom across the top and sides of my car, I cried a little.  I got mad at my husband.  With every swoop, I complained to..the air?...how I shouldn't have to do this.  I carefully stepped into his giant footprints as I walked around my car so I wasn't up to my stabby-ankles in snow.  I yelled to the air, something about how I could understand him walking right past a laundy basket, but an entire car?  No.  I decided in my mind that there would be no excuse for this.  "Just wait 'til tonight when he gets home"...that's what I promised myself.  He better get ready to pack his bags for the guilt trip I was about to send him on!

No, wait!  I had just 'resolved' to be more of a Proverbs 31 wife!  I can't ruin that just 3 days into January, right?

:::wait for it:::

WRONG!  Proverbs 31 says nothing of the wife having to clear her donkey of snow before she went to gather that wool and flax!  Yep.  He's goin' on a guilt trip...

And then my musings took a far worse turn.  I told myself those awful things we say to ourselves from time to time.  "No one cares.  No one understands.  When you have invisible symptoms, you're on an island-of-one."  I was feeling ridiculously sorry for myself.  And I cried.  A little more than a little.  All because of some snow.

"Pity party of one, your table is ready..."

So I drove to Dunkin' Donuts, because I felt like I was entitled to a chai after all that snow clearing business.  My whole body was vibrating and the stabby pains I had in my face last night were cranked up to 10 and biting me in the ankles and shins.  My right eye was doing this new thing that I'm kind of fascinated by.  Each time I blinked, it was as if I had a water droplet in my eye...but I didn't.  It was just a distortion that cleared when I blinked, then would become distorted again.  Hmph.  "That's interesting!", said self.

I waited in the drive thru line with what I estimated to be...the entire town.  Finally, I received my chai and carefully placed it in my cupholder.  My hand was twitching and the very last thing I wanted to do was spill it.  I felt so happy in that moment.  I mentally subtracted a few things I might say to my husband when he got home.  I shifted my thoughts to my work day and began prioritizing my tasks.  For me, running through a mental game plan is no different than waking up and running through the physical functions checklist...do I have good sight in both eyes?  Eh, just one eye?  Okay, great!  And can I think straight?  Yes?  Great!  Anyway, at that point, I was stopped at the longest red light in town and ready to take a sip of chai.  I carefully removed the cup from the holder, took the lid off (germophobe, ms's fault) to take a sip and noticed...it was only half full.

:::::what::::

Oh no.  On came those awful feelings all over again!  REALLY???  You shorted me on the very thing I just rewarded myself with?  Someone has got.to.be.kidding.me.  Is that why she was smiling at me when she doesn't typically engage with the customers?  I'll bet it was!  And I oughtta spin this car around in the snow and go back to ask for the OTHER half of my chai.  I'll even say "please", because I'm classy like that!  But. I knew that turning around and going back into the store - in my current emotional state - wouldn't be a good idea.  I drove on to work.  Crying a little, but at least the right eye had an actual reason for the distortion.

My mind was spinning in high gear as I drove up the road toward work.  My pity party was in full swing when I noticed a man snowblowing the loooong walkway that runs along the front of our building and down a hill.  He was bundled up - the type of bundling where you could only see a bit of a nose and eyes.  The wind was blowing against him and the flying snow.  I thought it was one of the young men from a plow crew, because who else is going to be out there in the blustery winds, right?  When I looked closer, I realized it was...the boss.

For some reason, that snapped me out of my rut.  I remembered how blessed I truly am in spite of this stupid condition.  I have a boss, which means I'm blessed with a job.  And I could go on and on about how that boss is always concerned with things like...the climate of my workspace, and all the other things that working with something like ms would entail.  But he's a humble man and wouldn't want me to do all that ;)  I've been blessed with such incredible bosses over the course of having ms.  They have all been kind and compassionate.  They are not just bosses, past and present...they are friends.

The thought came to mind that my husband was also out in this weather, working, before the sun came up.  He may have figured I wouldn't be going to work this morning, which would explain why he hadn't cleared my car off for me.  I remembered him getting up at 3am to be sure he got to work on time.  He works very hard for us.  For me.  I thought of what it must be like to be him...watching me walk into stuff, drop stuff, and all that stuff ms does for me.  I can't lose sight of the fact that medical conditions can often be harder on the loved ones of a person than the actual person.

The truth is...everyone cares.  And I know that.  But what a slippery slope that sort of thinking can be.  I am so mindful of speaking positively to others, but I don't follow the same rule when it comes to myself.

Maybe that could also be a resolution?  Yes, yes it could!  And maybe I should also print out the full 31st Proverb and tape it to myself so I could refer to it often.  Ahem.

We're all in this together, ms'ers.  God bless us as we live each day to His glory...

Christmas Blessings

I remember what Christmas used to mean when my kids were little.

It meant staying up late to wrap gifts and hide them under the tree while Santa ate all the cookies.  It felt like we barely hit our pillows before the kids were awake and ready to demolish our hard work.  My husband so couldn't hang with me.  See, my picture was next to the word "insomnia" on wiki.  I was used to waking up with our son every hour or so for the first 6 years of his life that I could be up and ready to take on a 10hr day at the snap of a finger...or at the gentle tug of my blanket ;-)

Now that the kids are 14 and 15, it's a little different.  First and foremost, the kid that used to wake up constantly?  Now sleeps like a rock.  Second, our daughter is kinda over the baking-cookies-Christmas-Eve thing, which my husband is sad about.  Third?  We went through a complete financial collapse a handful of years ago.  It's really only been the past 6-8 months or so that we've gotten to our feet.  Christmas has been provided by my family, our church family, friends, and neighbors.  Not just Christmas, but the occasional groceries, gift cards for gas in our cars so we could get back and forth to work, random gifts of things like movie passes, tickets to hockey games, and invitations to stay at friends' vacation homes for free so that we could take our kids away overnight...all blessings that others have provided out of their love for us and the incredible goodness of their hearts.

Merry Christmas.

So this morning, as my daughter and I got up to share some breakfast, we couldn't help but feel that familiar chill in the air of our house.  The difference this year?  Is that I turned up the thermostat and the heater came on.  And the oil tank is full of oil that we were able to purchase.

Merry Christmas.

The opening of gifts?  No, not this year.  Because when I asked my kids if there was anything they wanted, they looked around with that searching sort of expression, then shook their heads.  My son, the talker of the two, asked, "is it weird that I feel very...I don't know...content?"  He just wanted others to have gifts in lieu of whatever we would have gotten for him.  My daughter is equally content.  She decided to bake cookies for her friends and knit random pieces out of yarn that she found in her room.  She's calling them 'scarves', but they're probably only long enough to fit guinea pigs.  No matter.  As she knits, she smiles.  She doesn't even realize it...

Merry Christmas.

To us, Christmas is an every day kind of experience.  But we couldn't have felt it in the way we do today without the times of trial.  Kind of like how ms has made me value and appreciate my abilities in a way I never did before.  I think it's safe to say that most people get up and drink their coffee without understanding what a blessing it is to...taste it.  For me, I never know if I'll actually taste it until I try it.  If I can't, which has been my story much of this month, it's just warm liquid.  But today?  I can.  And my goodness is it delicious :-)

Merry Christmas.

If anyone needs scarves for their guinea pigs, let me know.  They're really quite beautiful.

(grocery) Shop 'til You (almost) Drop!

Grocery shopping...

You know, I'm not sure if it's the reaching + the placing + the lifting + the bending + the up/down of the head, which is connected to the neck, which has an abundance of holes in it...but grocery shopping is NOT kind to me.  Never has been.  And some trips to the store are more difficult than others.  

Tonight was that night.

It was one of those times in which we found ourselves out of everything.  And I mean everything, not those awkward moments when the husband says, "there's NOTHING to eat in this house!" because we're out of, like, peanut butter.  

Anyway, this was not a trip for my little cart.  No no.  This had "large cart" written all over it, as well as a list my family had written on an envelope...front and back.  

By the midpoint of the store, this was pretty close to what I was seeing:

And my thought process?  Similar.  Picture this...in my brain:

Thankfully, I knew exactly which aisles I needed to visit, as well as the approximate locations along the rows and columns and blurs of grocery items.

1 hour and 45 minutes later, I was dragging my cart to the check out line.  Wobbling.  Slightly swaying.  Highly confused. 

...really need that  'not drunk - ms'  t-shirt if someone could get. on. that. 

I unloaded my cart by pretty much stacking things atop one another, carefully avoiding eye contact with my cashier.  It's almost like when your car isn't running properly?  And you're approaching the stop light, feeling it wanting to stall?  So you just kinda...keep going?  Yeah, that's what I was doing.  But with groceries.

I then loaded my $312.56 worth of cheaply, plastically bagged-ly groceries back into my cart, slowwwwwly pirouetted (is that even a word, or is that like 'plastically bagged-ly'?) to my handle bar, and set out upon the lengthy walk to my car.  

Each step was a gift.  Even the one where I tripped on those stupid concrete inserts with the bumps that like to eject items from your cart.  My large cart began to feel even larger.  Ginourmous, even.  Like this:

You should also know that I do this thing where I get really close to my car and let go of the cart so it rests against the back and I can easily load the hatch.  Well, tonight I kinda misjudged the process and let my giant cart go a little too early.  No.  Way too early.  The cart-which-runneth-over picked up a bit of speed and...  

WHACK!

...right into the back corner of my car.  The force even shook my car a little, as well as drew the stares of a woman walking by.  Know what?  Don't judge, lady.  Because you didn't have to push THAT around the store for almost 2 hours. 

But it doesn't stop there.

I unloaded the cart much like I did inside the store...by throwing the bags on top of one another until the cart was empty.  By that point, I was doing that "I must think everything through 3x before carrying it out" thing that I do in those rare occasions when my brain goes tornadic.

Started the car.  Is this thing on?  Yeah, it's running, right?  Turned the lights on.  Wait.  Why's it look dark inside the car?  Did I turn the lights on?  :::look at dial on stick::: Or is this on?  No.  That's off.  Okay, okay...that's on.  It's dark outside, so it's supposed to be dark inside the car.  Okay, foot on the brake.  Put the car in reverse.  Foot on brake - check.  Look down to make sure we're really in reverse.  Yep, totally in reverse.  Wait.  Is this thing on?  Yes.  Okay.  We got this.  Wait, who is 'we'?  We.  Me and you, ms.  

Every process is like this.  Until this lifts, that is.  

Respect the grocery-induced ms brain fog, people...'cause the struggle is real!

A high schooler taught me that phrase so that I'd be cool ;-)  Now you can be cool, too!

Taking MS to Jury Duty

Recognize:

MS and I went to jury duty today.  Jury duty at County court.  Which is in a busy city.  With parking garages and parallel parking.  And lots of one way streets and lanes that randomly end with little notice.  Don't forget functional railroad tracks.

I don't know about you, but one of my biggest coping strategies - developed over the course of 14 very stubborn years of living with ms - is "habit".  Like a Wonder Twin power, if you will.  For instance, I grew up in the area in which I reside.  I park in the same row at the grocery store and the gym so that I don't lose my car.  If I can't find a spot in that row?  I leave.  I know about how far the restrooms are at any place I go, which translates into knowing exactly how long I can (or can't) hold it.  Ya heard?

Take me out of my little town, my office, my grocery store, or my gym?  Well, let's just talk it out...

Google said today's drive would take 43 minutes, so I left 1hour and 15 minutes ahead of my arrival time.  What Google didn't account for was sun glare, road construction, school buses, and the fact that every single person in the world was driving to work at that hour, though none were in any particular hurry.

While that brightly shining sun poses difficulty for each and every one of us on a morning commute, it (along with any extreme brightness or darkness) borders disaster for me.  The reality is?  My eyes do not adjust very well since the flare of the early 2000's.  By the time I reached the city, about 5 minutes after I was due to report for duty, I could only see a few letters on the street signs.  I was so busy trying to solve the Wheel of Fortune puzzle at each intersection that I didn't notice the lane closure up ahead.  At that point, I had 2 choices...#1) be even later, due to the miles of cars who got the memo and were actually in the correct lane...or #2) get back in touch with my inner drag racer.

#2 ;-)

Parking garage was next.  Fellow ms'ers with eyes like mine!  What's the most exciting thing we can do when our eyes are seeing nothing but white spots?  If you said, "drive into darkness!"...you are on my level!!!  By God's grace, and only that, did I get my car into a space.  I parked on a floor that was fairly empty so that I didn't risk putting black pinstripes down the sides of any fellow motorists.

Fast forward to entering the courthouse, where the elderly security guard with the gruff tone was barking at us to put our car keys and cell phones in the bowls prior to placing our purses on the conveyor belt.  As I approached, I couldn't help but feel that it was my duty to not just be considered a juror, but to make this guy smile.  So I said, in all my outward snark, "where are you goin' (with my keys and phone)?"  To which he stopped, stared, threw me a half smile, and said, "to hell, maybe!"

Winning :-)

From there, I had to be escorted to the marshalling room (because I still had the ginormous white spots in my eyes a la flash bulb and could not read).  Apparently, I was walking directly into a court room and that sort of thing is frowned upon.  A very sweet attorney saw my near-tastrophe and guided me to safety.

My eyesight slooowwwwly returned in the marshalling room, where facebook kept me company and a select few jurors pointed and laughed at/with me for my interactions with the security officer, or maybe for the fact that I needed to be taken to the proper room, or maybe because I decided that a bottle of water did not qualify under the "no food or beverage allowed in this room" designation, but I didn't want to get into trouble, so I concealed it in my purse and drank it that way.  Because come on.  That ms thing that randomly grabs me by the throat makes me kinda thirsty.

:::another perfect opportunity for the "I'm not drunk, I have MS" t-shirt:::

The rest of the day was rather uneventful.  Thank You, Jesus.  Until it was time to leave.

The parking garage?  Yeah, about that.  I never looked to see which floor I was on, so I had to stop the elevator at each floor, get out, walk up to where my car would have been, had it been the proper floor...rinse and repeat.

I finally found my car, but the spaces that were open on each side of me?  Weren't anymore.  Not only that, but I was parked in...both cars over their lines and within approximately 6 inches of my car.  No matter.  The diagonal parking made it possible for me to squeeze into the one rear door.  I began utilizing this strange combination of twisting and pushing and pulling and stuffing myself into the slim opening of the rear door.  All I could think of was that time I got my head stuck in the wrought iron railing when I was a child.  Mom had to put Blue Bonnet margarine on my ears.  How embarrassing it would be to get stuck in my own car door - and not by the ears?  I doubted that anyone at the security booth would have butter, and I was positive I wouldn't want it if they did.  Alas, despite my laughter and resulting weakness, I found enough leg strength to push myself through the door.  That's when I realized I was not alone.  A woman had witnessed my sheer brilliance and...cheered for me.

I don't know what to say, people.  I just keep it classy ;-)

I couldn't make this stuff up if I tried.  Thus the title of my blog.

Be well, friends!

Getting Back on The Horse

That awkward moment when.................

...you wake up at 6:30am with a burst of energy and drag a laundry basket full of towels that you can't see over the top of down 2 sets of stairs and get those in the washer and then come upstairs and unload the dishwasher and get the coffee on and preheat the oven for hash brown potato patties and whip the eggs up in a bowel for french toast and....you bend your head down to test your body to see whether or not today is another day of hanging out with your BFF, L'hermitte...but he isn't there.  Neither is the gaggle of spiders that had been crawling all over you.  And that little guy with the sharp object?  Nope, he's not hanging out on your left shin anymore.  The belt around your neck is gone, just like the vice in your chest.  And you must have kicked your blanket of depression off the bed at some point last night, because it's not tangled up all around you.

I had that awkward moment this morning.  And yes.  That's pretty much what a single thought sounds like in my 200mph mind.

I suppose I can consider this flare gone, at least for this moment in time?  Looking back, I realize it had been around for a few months.  I tried everything that my medicinally challenged body can do to speed the "get outta here already" process along, but failed those as well.  I ate and drank my dark berries.  I switched from coffee to green tea + honey (GASP!).  I tried, desperately, to exercise.  For the first time in 14yrs of life with this very unwelcomed guest, exercise seemed to make matters worse.  Walking hurt. A lot.  Riding a stationary bike was better, but made everything vibrate before going numb.  I couldn't recover for days and, by recover, I don't mean "let's do that again".  It was more like "let's just sit nice and still".

Just this week, someone at work had asked if I'd lost weight.  I politely smiled, thanked her, and said I hadn't noticed.  Total lie.  I haven't lost weight, but I've certainly lost a great deal of tone and strength.  As complimentary as she intended to be was as hard as her kind comment hit me.  I'm so used to an invisible disease and I've always liked it that way.  Looking fine on the outside and fighting an inner war suits me just fine.  But now, someone saw that my clothes aren't hanging off of me in the same way.  What looks like weight loss?  Is atrophy.

I came to the conclusion, while slouched like a blob in my desk chair, that this may just be my new "normal".  MS-y, depressed-y, fluffy, saggy, and kinda weak.  I had a lengthy conversation with God, which went pretty well, considering the fact that I was totally content with my pity party.  As a result, I was reminded of all my "can do"s.  My thoughts moved from my MS-y limitations to my family, friends, and the amazing stuff my kids are doing...all that they're becoming.  I knew my weekend would be stellar.  Breakfast with a friend!  A special Saturday night worship service!  Hang-out time with my daughter!  My son's playoff hockey games!  I realized that I have too much to look forward to...too much to give thanks for...and there's simply not enough time to feel depressed-y about some atrophy.  And that it's okay not to accessorize my work attire with necklaces.  Because with that belt-across-my throat sensation, I'd rather throw a necklace than wear it.

See?  I got over myself.  With the Lord's help :-)

But?  I suppose waking up this way means it may be safe to try and get back on the horse.  I'll definitely need a stool and lots of handles with which to drag myself back on, but...I suppose trying is the only option...


Be well, friends!

Follow Up to "What's On My Mind" - our son's healing

I had such an overwhelming response to my last post that I thought I'd do a quick follow up :-)

(thank you, really...)

My son went to the dance.  Well, maybe we should refer to it as "the sit and talk", because that's what he said he did.  And you know?  He *loved* sitting and talking with his beautiful friend.

...yet another thing he struggled to do years ago.  Hold conversations with peers.

In fact, he and I will occasionally joke about the one instance, during social story homework, where his inner sarcasm peeked through.  It nearly caused me to wreck my car with both of us in it.

The story:

When did a mother (who worked a full-time-plus-over-time job, not-to-mention-dragging-MS-around) squeeze a portion of that homework in?  On our 45 min drives home from therapy appts.  I would slide the bottom of the ginormous packet under my thigh, quickly look down at it to read, and send a question his way.  Exhausted...he would process, sometimes longer than others, and present his answer.  We would then discuss whether or not that was the best response.  I recited the following question:

me:  "Can a hot dog be angry?"

:::one miss-i-pp-i...two miss-i-pp-i.................twelve miss-i-pp-i:::

me:  "Bud, did you hear me?  Can. a. hot. dog. be. angry."

him:  "...yes."

What?

I was shocked.  Stunned.  Trying to think of ways to help him understand that hot dogs did not have emotion, though maybe they should?  Who are we to judge?  I stared into my rearview mirror with mind blown wonder...and drove off the road.  But.  Once I got the car back on asphalt, removed my heart from my throat, and regrouped...I mirror checked once more.  I saw his face, pointed out his window toward the beautiful scenery we were blessed with on these appts, and saw something even more beautiful.  His smile.

me:  "so you're kidding?"

him:  "...yes.  What kind of question is that?"

me:  "dude..."

While his struggles are behind him and I give the Lord all praise and glory for every ounce of healing, I can see the abundant blessings that came out of the journey.  The hours he spent with therapists at that facility gave me hours of hermit time in their chapel.  I didn't fit in with the other moms who clipped coupons for hours on end and talked about their homemaking responsibilities.  They just reminded me of who I wasn't, so I went to hang out with my Lord...where I always fit in.  Another blessing is the very close relationship my son and I have.  He will not hesitate to talk through things he is experiencing as a teenager.  To 'check himself', if you will.  He is all the more in tune with the emotions of others.  He is empathetic, nearly to a fault.  Most importantly, he recognizes the Lord's hand in his life.

Some of you have asked what therapies we did that helped.  We had done many, but the program that helped bring about his healing was through The Family Hope Center:

http://www.familyhopecenter.org/

I'm not saying it's quick, easy, or the cure-all for everyone...I'm saying it worked for us.  In addition, certain facets of the program helped restore function to my left side after a particularly evil flare.  Thankfully, help and/or healing come in so many packages and God is the ultimate multi-tasker.
 

The money shot:

And this is the limit:

Be blessed, friends :-)


Romans 8:28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.