Friday, December 11, 2015

It's Been Awhile - a story about how I ain't got time for MS

I was reminded's been awhile since I've written a post.

If that Staind song is now playing in your head, you're welcome.

So what happened day, I picked my son up after a soccer game.  When he couldn't produce an answer to my typically elated "how was the game!" inquiry, I realized something was askew.  What, you ask?  Well, he took a ball to the head and couldn't quite fill in the details.  Annnd so we went to urgent care.

Proper use of blanket - affected

He was dx'd with a concussion.  Which is his 2nd one.  Honestly, it's probably his 3rd concussion, but the "first first" one didn't require more than some advil and rest.  It wasn't officially dx'd.  I can't leave out the fact that he's already gone through years of therapies to overcome a brain injury he sustained as a toddler.  And, like his mother, he's a migraineur.  Which makes brain stuff worse.  So. Yeah.

That blanket covered evening was about 3 months ago.  Since then, he's been to an extensive number of medical and therapist appointments.  A couple of weeks ago, he even had a fun little trip to the ER after a particularly concerning day in which he had become extremely confused and complained of a very localized, severe pain in his head.  CT negative, praise God.  Also praising God that there weren't any speed traps along the way as I was driving to the hospital, because that would have added even more dollars to this injury's bottom line.  

People ask if he's getting better.  I really don't know how to answer that, because it's so variable.  Over the course of a single day, his struggles vary from pain to dizziness to irritability to anxiety to visual disturbance and back to pain.  All the while?  He looks completely fine.  And that makes it a little more challenging.

We "invisible symptoms" folk know a thing or two about that...

I've stood by the mantra that none of this is about me.  But this is my blog - my outlet - and so I might just allow myself to take a moment to let it be.

It's been incredibly challenging to get him where he needs to be...when he needs to be...and be where I need to be...when I need to be.  The appointments and meetings feel quite constant.  Because they kind of are.  But I realized something the other day, as I was sitting in the quiet confines of my window tinted car (because my car is my cloaking device), with my eyes closed (because I was too tired to even "look"), quietly thinking to the Lord (because He hears me no matter what), explaining to Him that I was whole thing just...UGH!  I feel so frustrated.  Angry.  Exhausted.  Angry.  Spent.  And let's not forget angry.  Then, angry toward my poor husband, because he's not angry.  Sure, he cares and loves his son.  But he's not angry.  Which makes me angry.  Because seriously?  WHAT is broken in me??

WHY can't we all just agree to be angry on this???

Ohhhhh temper temper, there you are again ;)

I realized - or at least that moment of emotional spewing to the Lord under cover of my cloaking device helped me to see - that part of my intense anger stems from the fact that it's kinda close to home.  I get it.  I get the games he has to play as he navigates through this.  Some of you may also know these games.  They're entitled:

The "Let me put on my happy face and pretend that I'm okay, but I'm so not" game.
The "I can't think straight, but I don't want anyone to know it" game.
The "I'll do those tasks now, because I'm not able to do these tasks" game.
The "I'm kinda worried that I can't do those tasks I okay?" game.  
The "I can't see right and it's freaking me out" game.
The "What's that weird sound in my ear?" game.
The "Is this going to get better, or is it my new normal?" game.
The "No one understands me" game.
The "I just want to be alone" game.
The "I just want someone to reach out to me" game.
The "Nevermind, I guess I really do just want to be alone" game.

There are more, but...

So yeah.  That's what's been going on.  Handling lots of medical matters.  Managing life.  Or trying to.  And being angry.  But trying to hand that over to the Lord.  Truth be told, I'm pretty bad at handing things over.  Work in progress, right?

There are plenty of amazing things that have been and are happening throughout these months that I can focus on.  He has an incredible group of teachers coming to our home to teach him, since he cannot attend school for more than about an hour.  He's able to retain much of what they're teaching him, which is huge!  I've had some help in the way of rides for him and for our daughter, who also has places she needs to be.  He has a friend who reaches out at just the right times to check in on him, which is so helpful in keeping him connected.  He's been open and honest about struggles with panic attacks and I have been able to be with him in support. And surprisingly?  We've paid all but one of the many thousands of dollars in medical bills.  That was the hospital bill, so that's gonna be A. LOT. OF. COFFEES.

There.  I've appropriately ended on a positive note :)


Wishing you all wellness and happiness and blessings and things that are not anger!  Be well, friends!

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