MRI and Mutliple Sclerosis




 6 months ago,
i walked into an imaging center.
i laid in a tube for a brain MRI
and had zero inclination that the results would be anything but normal.

well, for those that know me or follow my blog,
you know that that one afternoon spent getting a MRI 
was a life-changer.

---
 
{6 months later}

i feel fantastic.
really, really fantastic.
besides giving myself daily injections,
dealing with the minor side effects from them,
and knowing way-more-than-i-ever-thought-i'd-know about neurological diseases,
i don't think you'd ever know i have multiple sclerosis.
actually, i just mentioned to my ever-loving husband that it still seems so surreal -
when I say those words -
{multiple sclerosis}
outloud,
it seems unbelievable.


for the most part, 
{only by the grace and goodness of my Savior}
 i feel like i handle this whole
i-have-a-progressive-debilitating-neurological-disease gig
pretty well.

that's why,
when a week ago i walked into that same imaging center for a repeat MRI,
my emotions surprised me.


it was as though i was returning to visit a gravesite, really -
the place where the line in the sand of my life was drawn.

the place where my adult life will always be marked as {before} and {after} MS.

that imaging center was a tangible reminder of this disease of mine -
a tangible reminder of how my life has changed, of how my reality has changed.

but you know?
it was also a tangible reminder of the grace and goodness the Lord has poured out upon my life the past 6 months.
He has met me, time and time again,
exactly when I needed Him to. 

His Word has comforted, encouraged, and challenged me to remain steadfast, abounding in good work, and to run with endurance this race the Lord has for me.

and during that MRI a week ago?
I felt like the Lord showed me one small way He loves me, 
even while I was laying in that loud tube.

 I was a bit on edge for the results of this MRI,
but I was doing okay.

okay until the tech 
{whom actually remembered me from 6 months ago!}
came in and started saying stuff like
God never gives us more than we can handle.
and 
be strong, girl, be strong.
and,
there's been so many advances in MS treatment! you'll be great.

i kinda started to panic.
really panic.
like, 
get me out-of-this tube-right-now or i may throw up all over it 
panic.

and then,
over the huge headset they gave me in which i was listening to a Christian radio station,
i heard

"Bless the Lord,
oh my soul,
oh my soul,
worship His holy name."

a couple months ago I wrote about how Matt Redman's song 10,000 reasons had been so influential in my life and in my MS diagnosis.

and it came on, over my earphones, in that MRI machine at the peak of my panic.

so, as I heard that song that I have essentially listened to over and over and over again over the past few months,
i calmed. i remembered the God I serve and How big He is - 
how much bigger than MRI results.
how much bigger than any neurological disease.

Matt Redman sang

And on that day when my strength is failing
The end draws near and my time has come
Still my soul will sing Your praise unending
Ten thousand years and then forevermore

and I remembered how incredibly short this life is.
and when the day comes that my strength fails -
no matter how much sooner or later it is
still my soul will sing His praise.

--

and, by the way,
my MRI came back unchanged from the one 6 months ago.
in neurology talk, folks, that's great news.
kinda means no disease progression.
amen, amen, and amen.
 




Ready, Set..




Go!

{doesn't everyone wanna somersault in their front yard, swimsuit and rain boots necessary?}





sweet, spunky Grace.
i love her. a lot.


Kindergarten




 Growing up, my mother was an oldies fan.
that meant that now, in my {ahem} early thirties,
i know lots of random lyrics.
lyrics like
it was an itsy-bitsy-teeny-weeny-yellow-polka-dot-bikini
that she wore for the first time today.

tonight,
i've got 
{leaving on a jet plane,
don't know when I'll be back again}.
in my head.

except instead of a vietnam soldier or some ex-boyfriend the song was meant for,
i'm thinking of my about-to-be kindergartener.
{this Kindergarten business?
it kinda feels like he's leaving on a jet plane, right?}

 
in our household tonight,
all our bags are packed,
he's ready to go.
 
 


his lunch is packed,
he's ready to go.




Grant, buddy,
Now the time has come for you to leave,
one more time let me kiss you
i'll dream about the days to come.


This bittersweet stuff?
it's gotta stop.
 soon.
my momma heart may not take it much more.

but, for now,
i smile at Grant's 5-year-old exuberance,
embrace this Kindergarten stuff,
and trust the Lord all the more,
with this dear, sweet boy of ours
who is about to be one step closer 
to growing up.








Coffee date!




{okay, so, wrote this LAST Monday morning, and it sat in my drafts folder for a week.
here ya go, anyway. }

--

Happy Monday morning, all.



I sit drinking a homemade latte...
wanna join me for a coffee date?


this is what I'd tell you.

---

It's a bit cool 
{well, cool at least for the hottest-july-ever-stuff we had}
and rainy this morning.
kinda making me eager for fall, here, folks -
pumpkin bread and coffee and sweaters and boots and crisp mornings -
{will try to remain content with summer for now.}

 --
some friends loaned us some puppets, and the kids have loved playing with them.
 grace, our animal-loving-3-year-old, has kinda fallen in love with them.




--

everyone's FB statuses and photos of first-day-of-school pictuers are killing me.
seriously -
we have one more week of not-Kindergarten-yet and I'm enjoying it.
a little bit ago I was texting a friend about her daughter's first-day-of-Kindergarten 
and was crying happy and sad tears for her over the text of "dropped her off".
{Kindergarten, people!}
seriously, when did my babies get big? 


--
{i'm on my second latte. 
what are you drinking this morning? I'll get you another cup.}
organization makes me really happy.
and yet, somehow, i'm okay with laundry unfolded. weird.

found this idea on Pinterest for ribbon organization out of a slacks hanger.
fab-u-lous.



--

I just started this new bible study called 
{Lord, Change my Attitude}.
4 days in and totally challenged.
I'll be leading a small group of ladies from church through it this fall and I'm way excited about it.
somehow getting together with sweet friends, sharing how the Bible is changing our lives -
it's really special, and I've missed our Bible study over the summer.
what have you been reading?

--

alright, friends.
my latte is almost gone and it's getting cold anyway.
hope your Monday is smooth, blessed, and you stay in step with the Spirit's leading today.

May the words of our mouths and the meditations of our heart be pleasing in His sight,
our Lord, our Rock, and our Redeemer. 
psalms 19:14

Love y'all!




Saturday night.




grace abigail.


Yesterday I ran a quick errand 
{for the never-ending paperwork of health insurance!}

The office where I had to go was located directly next to one of my doctor's office.
the doctor's office that I had not been to since late last February.
the doctor's office in which I sat, stunned.
the doctor's office where we first heard the words 
{multiple sclerosis}.

it kinda brought back a wave of emotions 
that surprised me, since, for the most part,
I feel okay with this whole
{I-have-a-progressive-neurological-disease} business.

seeing the doctor's office took me back to that point
late last winter where we cried out for God's comfort, grace, and hope.

and it reminded me, so, so, so much
that He has answered.

although I believe He is the Great Physician,
for whatever reason,
He has allowed this disease in my life.
and, in doing so,
He has poured out grace upon unending grace.

i don't know if I can be thankful for a progressive disease.
really? i'm kinda not.
but, in a supernatural way, I'm thankful for the depth of understanding of God's complete Sovereignty.

we're told our faith is of greater worth than gold,
and that the testing of our faith proves it genuine.
i peter 1

somehow, in some Divine way,
may this testing of my faith -
the testing that comes in a package called MS,
the testing that comes with doctor's offices and medical tests
and lots of future uncertainty,
may it be found to result in praise, glory, and honor at the revelation of Jesus Christ.
 
and tonight, I pray for you.
anyone that may be reading this simple little blog of mine -
this blog that started as a family journal of sorts and has evolved into this,
this place I share what is deep inside my heart,
what somehow comes out better in writing 
anyway than what I could try to articulate it verbally -
i pray for you.

whatever the testing of your faith is tonight -
whether it comes in a package called health problems,
financial problems, kid problems, contentment issues,
marriage issues -
whatever the package is called?
may your faith be proven genuine through it,
and may the name of our Lord be praised.










Bento Box!




I don't mean to get too heavy around here recently - 
{all of this neurology talk. eek. it's the dichotomy of a serious illness - wanting to talk about it, but so NOT wanting to talk about it. does that make any sense?}

so, on a much lighter note - 
My favorite new way to pack the kiddos' lunches and snacks:
super cute, right?

Multiple Sclerosis: the nitty gritty




be fore-warned:
this is a really long, detailed post, 
outside my usual norm. 
trying to answer some specific questions I get about MS.

---
 i really, really like hydrangeas.


 Before a MRI report came back with the words
demyelinating plaque cannot be excluded
I knew very little about multiple sclerosis.
what I did know was kinda the worse-case-scenario.
annette funicello, anyone?

After my doctor gave us the MRI news, however,
we were googling even before we made it to our vehicle.

we've kinda been on a MS-crash-course the past 6 months.
we {read: I} went through our fair share of panic and near-hysteria.
but, lots of information and more of God's grace later,
we're doing okay. really, really, really okay.

but, obviously, I get lots of questions about MS.
I never mind answering them.
actually, NOT talking about MS is harder than talking about it.
NOT talking about it is kinda like the elephant in the room, right?

so, here's my blog version of an MS crash course.

---

What in the world IS multiple sclerosis?

it's a disease of the central nervous system
{your brain and spine}
 
you know how an extension cord has the plastic coating around it?
that's kinda what our neurons have in our nervous system - 
they have a protective coating around them.
{called the myelin, for all y'all out there who, like me,
want to know every.single.detail. possible.}

well, in MS, for whatever reason,
my body attacks that protective coating.
 {have you ever had your curling iron touch the power cord and melt it a bit? 
that's what's happening - that protective coating is gone}
when that attack on the coating happens, it leaves a scar -
{sclerosis is the latin word for scar}

that scarring is what shows up on MRIs.
it's also what causes symptoms -
as my nervous systems sends out signals, it runs along the nerves, 
hits that scar, and, in me, caused tingling, weakness, and burning.

What kind of MS do I have?

I have relapsing-remitting multiple sclerosis.
this means that there will be attacks (also called relapses or flares),
which is what I had in January and February.

in between attacks (relapses), there's a remission period.
however, each attack can cause permanent damage that may never go away.
after my attack in February, 
I have left-sided weakness and tingling that has stayed.

What's the prognosis?

it's hard to know.
that's the scary and unsettling part of MS -
I could be fine for even several years, get an attack,
and then need a cane, walker, or wheelchair the rest of my life.
I could have a mild course of MS and live with mainly sensory symptoms the rest of my life -
tingling, burning, weakness -
or I could have a severe course of MS and be in a wheelchair and need daily assistance.

twenty years after diagnosis 2/3 of MS patients will still be able to walk
 -although they may need a cane or walker-device.

{you can read more about prognosis here}.

What symptoms do I have every day?

almost daily there will be a point where my left arm goes weak,
my left hand will burn, 
or my left foot will tingle.

compared to using a make-shift cane in February, I can live with a little bit of weakness!

sometimes I get really, really fatigued, too. 
that's a major issue with MS,
and we just try to adjust and nap. 

Is my medicine helping?

My daily injections don't really work like that...
they're really for trying to slow down the long-term disease progression
as well as reducing the frequency of attacks.

most people on treatment get on average on attack/year.
most people not on treatment get three attacks/year.

What can we do to help?

i'm really fine right now.
if you saw me, you wouldn't know I had MS, 
although a very observant person may see me occasionally rubbing my left hand or strategically picking up a cold water bottle with my left hand to cool the burning.

you CAN ask about how MS is going.  
casually asking gives me an opportunity to talk about it if I want to, but also just say something like "oh, I'm good", and change subjects if I don't want to talk.
this is with any serious issue, right?
NOT talking about it is WORSE than not saying anything 

for fear of not knowing what to say.


{and, ya know, you can always bring me coffee, a coke, or chocolate}.


 You're really okay, right?


I get this question the most.
emotionally, spiritually,
i am so very, very okay.

my dreams for the future?
they may not be what the Lord has for me.
the apostle Paul?
I'm sure he didn't envision imprisonments, shipwrecks, 
even snake bites
for his life...
and yet he said what happened to him served to 
advance the gospel and encourage his fellow brothers and sisters in Christ.
{philippians 1: 12 & 14}


MS is serious.
I get that.
I am extraordinarily humbled that the Lord would allow me 
to deal with such a heavy situation.
and maybe, somehow, in some Divine way, 
use it to help advance the gospel,
to encourage my fellow Believers,
to bring more Glory to Himself.

{extremely, extremely humbled}. 

my prayer almost daily is that I will walk this MS journey well.
may my heart remain steadfast -
confidant, immoveable,
always  aboudning in the work of the Lord,
because I know that my labor is not in vain.
{I Corinthians 15:58}



----

do you have a question about MS that I haven't answered here?
leave it in the comments and I'll answer it.

grace.




Grace, 
{three-and-a-quarter}
 upon walking into Pottery Barn for a mommy-daughter-shopping trip:

"Let's not go bye-bye, mom, okay? Let's stay at the mall? okay? okay? okay, mom?"

ah, grace. i hear ya.

a girl after my own heart, you are.



Grace upon Grace




Grant, while celebrating his papa's 60th birthday last week.
---

"For we have all received from his fullness one gracious gift after another."
John 1:16, NET Bible

One gracious gift after another.
that's so true, right?
my heart has been overflowing with thankfulness recently.

I started treatment for MS a couple of weeks ago -
a daily injection.
I was nervous about it, because, in all of my obsessive-compulsive reading about every.single.thing.possible MS-related,
I had read it could hurt.
a lot.
or sting, burn, itch, welt, hive.
a lot.

but you know?
for me, 
they barely sting.
I've gotten zero reactions to it.
zero.

{one gracious gift after another}
like having zero reactions to shots that will likely be long-term.
like having treatment available at all.
like having MS diagnosed early enough to start treatment early in the disease course.
like having a fabulous neurologist really close to our house.

{one gracious gift after another}
like the Spirit giving peace that passeth understanding,
even with the knowledge that my disease could become debilitating.
like knowing that this world is not our Home,
and though we may encounter various trials,
we have a Living Hope.
Hope for this life -
that I do not need to fear, for He is with me.
Hope for eternity to come.

one gracious gift after another. 
 
 
 
 

Father's Day




I got sick Saturday night.
sick as in,
 go to bed at 7:00 Saturday night 
 and don't get up until 2 Sunday afternoon.

of course, I got sick on a Saturday night.
of course, I got sick on Father's Day.
I mumbled a "happy father's day" to my loving husband as he brought me some orange juice and more advil.
and then proceeded to take care of, feed, play with, and occupy our kids all day long.
and, honestly?
he's pretty wiped out usually after Sunday mornings -
so, he took care of the kids all day, including his usual Sunday stuff.

he's a rockstar dad, right?

When I awoke with a 102* fever,
gone were my plans for balloons and streamers,
cake and icecream.

But you know what?
the day proved just a testament to what a father my husband truly is.

When we needed him to, 
he did what he does best -
he stepped up, 
took charge,
and loved us well.

Matt,
your loyalty and love to our family has been tested 
and proven over and over and over again.

thank-you-
for being the kind of get-on-the-floor, 
run-around-the-house, 
dart-guns-till-we-collapse kinda dad.

thank-you -
for your steady, calm confidence in the face of anything,
and for pointing our kids to their Ultimate Father.
they love you lots.
i love you lots.


and, I promise to have a do-over on the balloons and streamers part of father's day soon.