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.



Just Diagnosed with MS




my favorite 5-year-old,
with a celebratory ice-cream cone on his last day of preschool.


---
 
One week ago today, 
I sat on the doctor's table in a pink dress, 
flipping through some texts on my iphone as I waited.
My husband and I chatted a bit.
I browsed a brochure.
the clock ticked.

And then the neurologist entered the room.
And, after a lengthy discussion,
made official what had been discussed for months.

One week ago today,
I was diagnosed with 
Multiple Sclerosis.

---

almost 18 months ago.
{February 2011}

I had just returned home from 2 weeks in a small country in east Africa.
we were supposed to be there ministering to the workers there, 
but it was myself who was blessed beyond measure.

 The Lord expanded my horizons on that trip,
and made me long for something more for our lives.
I've written on my blog in several places about our desire to be radical with our lives.
Radical with our ministry, radical in our service to our Savior.

Upon returning home from Africa,
these are the words penned in my prayer journal:

"If you are willing and obedient, you shall eat the good of the land".
 {isaiah 1:19}

Father,
I long to be willing and obedient. 
Where you lead, we will go.
To Africa, to adoption, to other ministry,
to radical ministry right here in Indiana,
whatever you have for us,
we will go.

---

For over a year,
I have prayed to be radical with our lives.
 that wherever the Lord led us, 
we would follow.

Perhaps the Lord was preparing me for a different kind of radical service -
a life lived with a progressive neuromuscular disease.

This is now our new normal.
MS info is almost always a tab on my ipad.
we have stacks of insurance information and injection training paperwork.

This is our new normal.
and, you know?
it's okay.

I am, for the moment, over my initial panic and knee-jerk reaction.
for a month or so after our initial MRI i was panicked.
completely, completely panicked.

but now it's just back to life.
back to serving in our church here that we love.
back to playground visits and splash pad fun and Nerf gun wars.

{it's back to life}
back to believing what I always believed -
the God is always, always, always Sovereign.
that there are purposes to our lives that we may never see this side of eternity.
that my Hope rests on Jesus Christ and His coming again -

My hope does not rest on my desire to walk down the aisle 
{in cute shoes, nonetheless}
at my daughter's wedding.
 or to chase grandkids around our house.
or to travel into our retirement years.

My hope rests on nothing less than Jesus Christ and His righteousness.

Yes, our future may look different than our 30-something-year-old selves had envisioned.
it will be okay.

---
 
One week ago today,
I was diagnosed with multiple sclerosis.

whatever the future may hold,
may we be willing and obedient,
and walk in it well.

 



 

Bumblebee Transformer






I tucked this sweet girl into bed tonight.
and then 30 minutes later I re-tucked her into bed.
{she strangely took a 3 hour nap today! 
nice. but, bedtime is now questionable}

As I prayed with her {again}
she went through the typical cast of characters of whom to pray for.
bubby. mommy. daddy. papa's boo-boo.

and then, 
she came out with

can we pray for Bumblebee?

Bumblebee.
 as in the big, bright yellow, robot transformer.

Pray for Bumblebee, momma?

And my heart smiled.
I pictured my Father in Heaven smiling, too.

We thanked God for 3-year-olds and prayed that we'd get to see Bumblebee again soon.

sweet girl.

----
 

{Cast all of our cares on Him,
for He cares for us.}
i peter 5:7

Right?
every single care,
He cares.

every.single.worry.
every single situation.
every.single.thing.

He cares.

 Tonight,
as I received my first MS medicine kit in the mail yesterday,
I rest in the fact that 

He cares.
deeply, personally.

{He cares}

---

Getting Closer: Multiple Sclerosis




hydrangeas. they're some of my favorite flowers.

---

I was going back through some blog posts of mine,
and I noticed I've been quiet recently.

It's not that there's nothing to write about,
kinda the opposite, really.
like my heart has so much to say that it seems too much for a simple blog.

since my last post, I've had 2 more tests
{bloodwork and an EMG}
come back within normal limits.

while normal is good
{after our shock of all shock MRI results late February,
I'll always, always, always breathe a deep sigh of relief when health stuff comes back normal}

these were also kinda the last two possible things to give me a 
get out of jail free card
and skip me pass the whole MS boardwalk.

---

I have a neurology appointment Tuesday.
the closer it gets,
the more real it gets.
the more surreal it gets.

i mean,
ME.
anna ruth w.
mother of 2.
pastor's wife.
former teacher.
runner.
cook.
photography hobbyist.
lover of coffee.
barefeet.
orphans.
kids.
and good conversation.

 

ME.
i am about 
four sleeps
{as my favorite-5-year-old would say}
away from sitting, 
once again, 
high on the doctor's table
and discussing a life-long degenerative,
possibly debilitating 
 disease.

---
 
so, though I've been quiet on here,
my heart has been full.

full of lots of little kid fun.


full of basking in these early summer days with little kids.


full of trying to not think about how much our future might possibly change.
full of not thinking about how nervous I am about MS treatment like daily injections.
full of not thinking about the possibility of cognitive impairment, motor impairment,
sensory impairment, and all sorts of other MS complications.

full of just trying to not think about MS in general.

and, full of knowing deep within, 
that though we are getting closer and closer 
to an official diagnosis,
official treatment,
I am incredibly, incredibly incapable of handling a life with MS.

and, full of knowing that the Lord can handle it, 
and His Strength is made perfect in my weakness.

{and that is enough for me}.



Diagnosis: {Almost} MS






Matt Redman's 10,000 Reasons is on my play over-and-over-and-over again list these days.

Have you heard it?
Bless the Lord, O my soul
O my soul
Worship His holy name

The sun comes up, it's a new day dawning

It's time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes

The lyrics are near and dear to my heart these past few months -
these past few up-and-down, panic-laden, trust-inducing months.

---

 one of my all-time favorite pictures of Grace, at just-turned-2, with her beloved bear.

---

{Last Thursday}

I had had a few months to process the neurologist's thoughts.
her thoughts as in
i think you have multiple sclerosis.

I had prayed that I would ground myself in truth -
truth as in 
do not fear.
in your weakness, you will be made strong.
No plan of God's can be thwarted. 

but, as, once again, 
the white paper crinkled beneath me as I awaited the doctor,
i was nervous.

nervous about hearing an official diagnosis.
nervous about possible tests I didn't want to do.
nervous about what the journey of this diagnosis would entail.

the dr. {finally} entered the room.
she reviewed my previous MRI's,
discussed a few last thoughts on a few other tests to be absolutely sure we're not overlooking anything.

I listened.
I asked
{if my blood work comes back normal, is MS the only thing we're left with?}

she thought briefly and answered

MS is the only thing we're left with.

-----

So, we left the doctor's office with an almost-diagnosis.
I return in a month,
where, barring any last-minute miracle,
we will further discuss starting MS treatment.
{probably a daily injection}

and, with that, our journey on this earth has changed.

in the book of Philippians, the apostle Paul {from prison!} writes:
"...what has happened to me has really served to advance the gospel..."

yes.  May even this most-likely MS journey -
may it, somehow, in a way that we'll never be able to see, 
serve to advance the gospel. 

My trust in the Sovereignty of God has reached a new level over the past few months.
this MS stuff? it's not a suprise to Him.
I worship God for who He is,
and He is always good, always compassionate, always loving.

whatever happens to me -
whether I have a fairly benign disease course or a progressive one,
whether i deal with fatigue, weakness, tingling or not,
whether I can walk in 30 years or not -
may it serve to advance the Gospel.

And, as Matt Redman sings -
 whatever may pass,
and whatever lies before me:

May I be singing when the evening comes.
amen.  





Friday!




For the past week(ish) in my life...
{via cell phone photos!}

 i've been...

painting.
 i fell in love with a shade of dark blue from a picture of a friend's house.
my local Sherwin William people?
they've gotta think I'm a little bit of crazy as they've been helping me match shades of blue to an instagrammed-picture on my iphone.
but, i'm getting close to the right shade.
 


...hosting my sweet Bible study girls for our wrap-up dinner.
this is one of my all-time favorite recipes.
pasta and sausage in a cream sauce?
doesn't get much better than that in my book.



 ...wearing my favorite {just-turned-3!} year-old.
and her bear.


...forever cleaning the kitchen.
never ending, huh?
 

 ...and drinking lots of coffee and reading lots of Hebrews.
right before my neurology appointment this week.


that chapter is open to Hebrews 11.
...through their weakness, they were made strong...

{more on that dr appointment, later, people.
but, thank-you for still praying.  all results still point to multiple sclerosis}.

Happy Friday, all! 

--

wanna catch-up with my recent MS news?
click on the link that says "Anna's journey with MS" at the top of the page.