Monday, March 14, 2016

Well, THAT'S a bummer.

I don't need surgery!  Whoop whoop!

I've got this nagging problem they now know is "gastroparesis," which is a doctor's code word for "Your stomach doesn't empty out fast enough, if it empties out at all."  So here's the plan:


Ha!  Nothing.  I need to keep working out, so that's easy to keep up with.  I take Miralax if I haven't gone, and nothing if I do!  I eat smaller, more frequent meals, and I know to stop eating when I'm full.  So here I had myself worked up for NOTHING.  It was like Grover, at the end of "Monster at the End of This Book."  (PLEASE tell me you get that reference.  Please.)

When I had to have the endoscopy, something in my brain flipped off.  I had to fast- eh, okay.  Until 2pm.  Um.  Okay.  And I had to be put under for it, which is what it is.  Maybe that's what had me upset?  But at any rate, my brain started misfiring RAPIDLY.  I was trying to get Liam ready to go to my mom's, and I couldn't speak.  It sounded something like:

Liam, put on your ch-ch-ch-shirt.
I need you to f-f-f-f-comb your hair.
Come on now, it's time to get your sh-sh-sh-sh-shhh coat on.

I looked at Andy, completely terrified.  Because one can exist without feeling in one's leg.  When your brain goes...well.  What else do you have?

The attack went away in about 30-45 minutes.  I regained my speech, and felt foolish of the last hour of panic.  I had my test.  They said I was "unremarkable."  Fabulous!  I strive for mediocrity!  In my head though, I couldn't stop recalling that terrible episode earlier that morning.  "This is how it ends," I thought.  "This is how people like me end up in wheelchairs."  MS is sneaky like that.  You go into remission, meaning there's no attacks, life is good, you're maintaining your level of normalcy like a champ.  You ALMOST forget it's happening to your body!  Then it creeps up on you in small ways- fatigue even after you've taken your awake medicine.  An episode of drop foot when you least expect it.  A sensation that rivals ants running up and down your spine when you get out of the shower, and doesn't subside until your body temperature stabilizes.  Your stomach stops emptying properly, causing you fits of pain that are unending.

We're not victims, mind you.  MS patients.  We're a proud, proud people.  Nobody I have encountered in my short while in this diagnosis has EVER used their disease as an excuse unless they really needed to.  (There have been moments of teary confession to the supermarket clerks as I'm fumbling to sign my receipt, "I'm sorry, I have MS and this is very hard for me.")  Once in the recent past, we had someone on our street- a visitor- continually parking his little nasty car in front of my next door neighbors house.  She's got two little ones!  She needs to park there!  So I granted her a very rare 'get out of jail free' card.  "Tell them I have MS and you need to make sure you've got a place for me to park," I told her.  "I give you permission."  Hey, it's got to come in handy at some point, right??  As long as you use your powers for good and not evil, I'm down with it.

I feel like there's no comparison between diseases.  Cancer, ALS, MS, CP, MD...they're all equally crappy to have.  However, you never see as much pride with cancer patients in the "during" moments.  There are no "I'm currently fighting cancer" tshirts.  When the cancer goes into remission, of course we celebrate.  But the fight is long and arduous and private.  We respect those who are fighting that battle currently.  With MS, man do we sport our apparel.  We love flaunting it, because we love our good days.  We love those moments where we feel like every other Joe out there NOT fighting a disease.  I will wear my "I muck it with MS" bandana to the gym whenever I can, because it symbolizes strength and determination.  It symbolizes power over adversity.

I was sharing with Andy the latest ad campaign from the National MS Society.  They have folks wear 360 cameras to record their hobby such as skiing, surfing, dancing...and then they put the virtual reality goggles on someone with MS who used to do those things.  For a moment, that person is transported out of their chair and into the waves, onto the slopes, onto the stage...I was getting emotional watching the clips when Liam pops in.

"Mommy!  You have that!  MS!  You have that!!!!"

He proclaimed it like it was positively the best news he had ever heard.  They're saying it on TV and that must mean it's awesome.  I realized now that I'm thinking about it, he probably didn't associate the people in the chairs with the MS.  He was probably thinking about the dude surfing and the lady dancing.  He probably saw the skier and thought, oh COOL!  MS!

I locked eyes with Andy and he looked sympathetic.  It occurred to me for the millionth time that Liam would not know life without a mommy fighting MS.  If God blesses us with another child, that child will be born to a woman diagnosed with MS.  It's going to be a common household word and condition for both of my children.  Is that bad?  Liam can't wait to run MuckFest with me.  And as much as I'm like, YEAH BUDDY!  I'll run with you FOREVER!  A deeper part of me remembers waking up a few weeks back and not being able to speak.  It can all change in an instant.

We're so concerned about relapsing after we give birth to this child who isn't even conceived yet.  I was becoming obsessed with it until I realized I could relapse TODAY.  Baby or no baby, there are no guarantees in MS.  Or in life, really.  Then I'd get through this hopeful pregnancy, and I'd realize I spent all that time worrying over nothing.  Then I'd be left to think- well THAT'S a bummer.  I don't have that much energy- why spend it on worrying?