First Milestone Achieved

Usually keeping up with the blog
has been tough because
I haven't felt well enough and most of all have enough energy.

Now...

I feel like I have so much energy
I haven't slowed down long enough to update.

So I am now
18 days Post liberation Procedure.
It hasn't been smooth sailing all the way.
I didn't just wake up and turn into the biotic woman...
although it would of been nice to wake up to a new ripped body.

I have been struggling with neck and chest pains and headaches
from all the tugging and pulling and balloon tricks that went on in there.
Which leads to some
big headaches.
But I am trying to keep remembering it should be normal...

I say "should" because....

who know's?

unlike anything else "medical"
they send you home with an aftercare sheet
that tells you what to expect and
how to take care of yourself.
Well this being such a new procedure,
for my sons stitches I received more post procedure information.

So there is no gold standard of what to expect yet....

a little more lonely out here when you are one of the first.
But that is the trade off.

I will take it.

I needed to get past my first milestone.
The doc said if I went back to square one
by two weeks then we know that the
right valve didn't tear or break.

I am confident to say,
I believe I am out of the woods as things have been
progressing forward not backward.

And by the way my neck has been feeling,
if he didn't break it... then something else in there did.

So....Yippee!

My next milestone is at the 3-4 month mark.
There is a possibility scar tissue from the
surgery that can cause another blockage.
So I would know by all my symptoms returning.

So I worry. Every time I get a little tired,
or my foot twitches ...so...
I worry.

Support

My first day back to the office
the gang threw me a surprise party...

I was so touched.

I am so incredibly thankful to everyone for
the support and all the
encouraging cards,
uplifting emails,
listening ears,
a hilarious "going away package" (wink wink)
and even beautiful gifts sent my way...

I have appreciated it so much.

This has been as big deal for Matt the kids and I
to go ahead with this new procedure
and it has meant so much that you
all have been
so supportive.

So a big THANK YOU!

My Disney Day

Ahh..Today was just wonderful.

Two days post vein surgery

and I feel like I am 19 years old and

full of energy.

And here at Disneyland I feel full of childlike excitment...
I just want to keep pinching myself because I can't believe how amazing I feel.

How different I feel.
What better place to share this awesome new energy!

Matt was amazing making it the

happiest day for me.

We ate at all the fancy restaurants I have always wanted to eat at.

We strolled through the shops, again and again.

We rode the rides a couple times in a row sometimes.

(which we learned was a little ambitious as I was SORE

afterward and it brought on a serious headache)

It was just so fun to laugh,

smile until our cheeks hurt and just spend the day hand in hand.

And just celebrate this day of amazing miracles.

It was just a really great day.

Day Three: Recovery Day

Today we just hung out and recovered.

I had a very easy day.

I didn't hurt...yet. (that came later)

I had to be careful with my site at the femoral vein, being on blood thinners it was very important I didn't pull or stretch that area causing it to bleed. And they had to put my IV in my hand so I got a doosy of a hematoma bump there, but I am used to being a freak with the IV it happens with all my baby births.
But it was this little bump that when they wheeled me out, Matt took one look at my hand, got so faint I couldn't even talk to him about how great I felt, until he caught his breath and seriously bring color back to his face and take deep breathes.

No exaggeration here either I am afraid... I am totally serious. I actually said, "are you for real!?" The nurses always say (as he has had this reaction with all 3 babies) and says they are brought on by seeing someone he loves in pain.

Good thing he wasn't allowed in while they were destroying my valves!

Other than that I felt really really great. When I woke up the after surgery my head felt so clear and I had for the first time no headache behind my eyes.

I felt so refreshed I would of done our Disney Day today...but Matt just gave me his,
"Jenn your talking crazy talk again" look.

So we just hung out on the bed and watched t.v. and just chilled.

It was actually pretty nice.

Finally in the afternoon we had our appointment with Dr. Arata. I couldn't wait to tell him he was gave my life back and how great I felt. I walked into the waiting room and found a gal that I had seen at the pre op appointment. When we were both in the waiting room two days prior, she was in a wheelchair. Today...she walked in to her post op appointment.
I wanted to jump up and hug her. We started talking and like excited school girls about all the symptoms that have gone or are changing.

It was incredible to see.

When I met with Dr. Arata, he just sat and listened as I joyfully explained every detail of how I have felt the last 24 hours. He sat with a smile on his face and just listened as I happily erupted all my excitement as fast as I could. I apologized for being so excited, as anyone that knows me it was a very animated moment. But he just chuckled and told me he was thrilled for me. We discussed further about blood thinners and other details and then told me he would like updates regularly for as long as is convenient for me.

So we then felt it was a good time to go celebrate and go to In and Out.



When we go to Disneyland we always stay at the Candy Cane Inn.
I HIGHLY recommend it.

Clean (and I am freaky about that)-Great Great Price-Free shuttle-Free Big Breakfast-Nice Pool-Clean (it deserves being said twice)-Close, one block from Disney Main Enterance-and so Gosh Darn Cute!
...it has a beautiful cobblestone road, gorgeous flowers and ivy climbing up the walls...my favorite.

Our room was right behind this cascading ivy...love it.
So it made hanging out really nice.

Day One

As we were waiting to go in to get my MRV,
Matt says so how is the test done exactly? I said, I wasn't sure....

Oh boy. I should of checked.

It was probably good I didn't do the research on this one, because I would of never attempted without sedation as that is just plain crazy.

It is much like a MRI but this particular machine is
4 times stronger
than the best MRI machine and is so specified, they won't be missing anything.

But the process...
well there needs to be some advancement as I believe I can sign up for that again.

He begins telling me to lay down on the skinny table and asks if I am claustrophobic?
um...YES.
(but I immediately realize I should of made prior arrangements to get some
"you do anything and I won't care" drugs,
and was afraid I would prolong the test if I needed to get any so...)

I followed up with,

"But I will be fine"

phuhh... ya right.

Then he said I just have a few gadgets for you then we are all set.

Gadgets?

So we began with
gadget number ONE:

He placed a hard plastic neck brace snugly placed around my neck.

Then gadget TWO:
He proceeds to place a hard plastic cage
around my face with slits to see through.
(Man in the Iron Mask- ring a bell?)

Finally gadget THREE:
A heavy blanket/contraption to lay on my chest.

Finally he says,
"Your all set! Don't take deep breathes,
you need to stay steady and still.
And the test
will take approximately 2 hours."

Are you kidding me?

So after a few panic attacks and some MAJOR pep talks I went to my happy place.
When that didn't work,
I spent the time doing simple math, reorganizing my cupboards, and reevaluated my budget all in my mind,
and anything I could do to keep my mind busy in order to keep from
going seriously mental from my new worst nightmare.

It was one of the hardest things I have ever done.

Now when I am asked if I am claustrophobic. I need to say

"yes, where are my drugs?"

Day One...Complete. (barely)

What If's

Just 4 more days until we leave...

I can't wait.
but I am really nervous...very very nervous.

what if
I am not blocked and they say "sorry lady, no problem here."?
what if
they tear my vein or some other freak incident occurs?
what if
it really really hurts?
what if
I need a stent and I have to tell them no, is that the right decision?
what if
after spending over $10,000 for this procedure, our car gets in a wreck, our house floods or the kids cause a freak accident and all our furniture is ruined...(okay that may be a stretch) and then we need that money for such emergencies?

and my biggest fear of all...

what if it doesn't work?

I have felt that Heavenly Father has been holding my hand through this entire experience
...since the beginning...
but my hand is still shaking with fear's...or tremoring. (a little MS humor)

I am trying to squeeze all the faith I can out of that mustard seed.
Allowing me to be able to stand and have the courage to conquer these fears.

Matt told me tonight that

Real faith is when you get off your knees,
and then you do everything in your power
to bring about what you are praying for.

So...even with all of my what if's?
I will now have faith AND courage to stand up and do my part.

even if
my legs are shaking...
but with fear this time and not from MS.

The Big Day...or days!

So I have my date...

my date to get

unclogged
router routed
unstuck
rerouted
cleared up
get things flowing again


January 3rd
Fly down to Costa Mesa, California
January 4th
My test day to see if I am plugged
January 5th
The big day of unplugging
January 6th
Follow up appointment with Doctor.
January 7th
My day to go to Disneyland.
January 8th
Fly home

Yes I said Disneyland...
So it HAPPENS to be only 11 miles from the doctors office.
And Disneyland HAPPENS to be my one of my favorite places to go...really.
So Matt said this trip is for me...so he is going to make sure going to Disneyland HAPPENS.
I love that man.
Technically I am supposed to stay in the area for two days after the procedure, so might as well make the best of it right?

Reality Punching Hard

Disclaimer: This isn't a pity post: I just want to document my journey, good and the bad.

It has been 11 days since I was diagnosed and I think at about 1 week it hit me.

I don't want to be in a wheelchair.

I REALLY don't want to be in a wheelchair.

Then I started to cry and I haven't really stopped since.

I think it sunk in...
and it hit really hard.

I got a cold or something too
so that is probably compounding the problem because a regular cold feels like mono for me. So I spent a lonely last 4 days in bed.

Thinking.

My happiness and peace over the diagnosis lasted a big 7 days.

Big woop.

Now I am Devastated.
Scared.
Confused.
Angry.
Alone.
Frustrated.
and find new ways to hide tears from my kids.

I have pleaded to my Heavenly Father to guide me to ways to help myself in this journey.

It could be the recent loss of complete feeling in both my heels.
When I walk I can't even feel the carpet when my heels touch the ground. Eventually people that end up in wheelchairs, their legs become so numb they have no other choice.

I want to have a choice.

to not end up in a wheelchair in my 30's.

So as I mentioned to a friend the other day.
If I have to eat tree bark and sap everyday I will do it.

Dusting Myself Off

Okay....

I wiped the dust off...
slowly picked myself up.

And now.
I am going to

Rock THIS.

Like I know I can....

Like I have in the past.

as long as I have my

Heavenly Father.
Attitude.
Humor.
Family and Friends

I will be just fine.

Soo....

I grabbed my purse and headed to

Fred Myer.

I know they have a few aisles of health food items that according to my pile of books are of interest of me now. Previously I have never set foot in these aisles. In fact they had a particular smell that wasn't too inviting.

Do you know what the difference is between a health food aisle and a regular aisle?

Regular Aisles have Pictures.

I like pictures.

This aisle had tons of words and numbers.
And....here is a question for you...
if a mulit vitamin says it has 500mg of a particular thing.
And you need 1200.
Then do you buy a SEPARATE bottle of the difference? How much do you calculate you will get from food?

My head hurts.
Now I am thinking I need a special budget just for all the vitamins.

I think you need to go to school to just GO into this aisle.
I stood in that aisle for literally 45 minutes.

There are a lot of interesting people that frequent this aisle. Another reason why I don't.

I kept getting confused.
I hadn't really decided what team I am on yet?

pro PROBIOTICS no acid, no sugar diet
pro Extreme Low Fat, NO Gluten, No Dairy, No Sugar
pro Paleolithic Diet (I dunno if this is the same? see the confusion?)

So I pulled out my blackberry and thought,
"who could I google that should tell me what to put in my body and be healthy?"

Dr. Oz?

This didn't help much.

Finally after the sales associate asked me for the third time if I needed help, seemed upset that I wasn't finding what I needed, I decided to give up and go home.

And you know what I think.

There is far too many products out there...
some one could get hurt.

Growing Horns

Tonight we told the kids that I had MS.
Well Matt, did.
I sat there with a really big smile
trying to look as
happy, normal and un-sick-like as I could.

Jessica said "oh." holding a pillow.

Logan we weren't sure heard and kept tossing the pillow in the air.

Hunter buried his head in the pillow and started to cry.

We were both unprepared for all of their reactions. They had heard the word MS floating around the house the last few months and that basically the mood was that we were all rooting for
mommy NOT to have it.
Soo....

We decided to quickly explain what it was and I whipped out a
computer cord showing how it
represented our nerves connected to our spinal cord and brain.

I explained how the coating around the nerves (or cord) in my body are breaking down and the Myelin sheath is getting destroyed. Thus MS.

(Which causes insane pain as you end up getting down to raw nerves without coating, the chance of eventual immobility to a wheelchair, chance of blindness
but we skipped that part we were on a need to know basis.
We didn't need them all blubbering. )




We then told them.

Mommy won't die.
MS is not contagious.
There is no cure yet, but they are working on it.

and we want to work together as a family on this.

and most of all
Mommy's won't grow horns.
So stop looking at me funny.

I think they silently wondered if the prayer, song and treat were going follow it all seemed very similar to a family home evening lesson. I think they all were pretty satisfied and ran off to play.

A little later. Hunter came outside and sat with me out on the swing. He asked me a lot more deeper questions and basically wanted to know how he could help and
felt perplexed about it all.

He had decided he was going to find a way to save money for a cure and then he said.
"Mom, if it get's really bad, I will sell my swords."

This was a big deal.
Because these were the swords he recently inherited and found out were worth a lot of money.....AND fell in love with.

I wonder if "really bad" was when I grew horns?

Diagnosis Day

Today Matt and I drove up to Virgina Mason in Seattle to see the head of the
MS department of neurology and get some answers.

All morning I felt like my heart was going to jump out of my chest.
I kept suggesting the idea of ditching the whole idea and going to do something more fun...
I am sure there were a million better things to do.
Matt said he would drag me by my heels if he needed to.

We were greeted by an enormous board of doctor's names that could of been close to a thousand and made me start to feel dizzy and tired just looking at it.
I was close to bolting...if I could just walk.
After getting lost we finally made it to the right place.

We met my Dr's nurse who cheerfully said,
"Are you a new patient?"
I said yes.
He then happily says
"Welcome to Virginia Mason we are happy to have you here!"

I thought how he could of replaced "Virginia Mason" with "Disneyland" and it would of sounded the same. He was very chipper.
I didn't feel his same enthusiasm to be there.

After he left and Matt was flipping through a magazine I quietly sat waiting thinking,
"What if she comes in and tell's me I AM crazy....I have started down this road, and it ends up her saying it IS in my head."
I thought I was going to throw up.

My doctor comes in and sits down and casually says.
"What can I do for you?"
Like I am needing to order curtains and need assistance.

She sees my confusion and says,"Just start from the beginning"

I felt scattered and nervous trying to explain and summarize years of symptoms and agony for the next 20 minutes. And thinking after explaining every symptom, I must of lost her by now and I am sounding very crazy.

She thinks I am crazy. I just know it.

Finally I stop and ask, "Am I totally confusing you?"

She answered, "No you are doing very well actually."

I liked her after that.

She pops in my my brain MRI DVD and mumbles how great and clear the images are. I instantly think...Oh great, here it is... she is going to say, "Looks normal to me.... I don't know what is wrong you."

After more medical mumble and very impressive unspellable big words come from her mouth.

She sits back on her chair and says that she can see 8 or so lesions in my brain scan and that I have Multiple Sclerosis.....

She said it. Just like that. And then sentence didn't end in crazy.

She also didn't say...
nothing here buddy...nope can't see anything....or what are you doing wasting my time lady, get outta here!

Nope, she said it is Multiple Sclerosis.

I then said... "could it be migraines?"
She said...."do you get headaches?"

no.

I then said...."could it be lyme disease?"
She said...."did you get a bite at anytime?"

no.

She went on to explain why she believes it is multiple sclerosis and not anything else and that according the brain scan it is at the beginning and mild.

However my symptoms are bad and severe....

glad she noticed.

She said you can show mild lesions and have severe symptoms and the symptoms don't match the symptoms just help confirm the diagnosis.

Ya whooo. I am not crazy.

I knew it! Sort of.

So then she ordered a spine MRI because she was worried it was going to show the rest of the lesions, and a spinal tap to be done right away so she can find out what kind I have and how severe it is.

Bring it on.

So there you have it. I have Multiple Sclerosis.

I am not crazy,
I am not just lazy,
and I am not just a really slow walker.

So what to do first?....

1. First thing I need to do is figure out how to spell it right because I have had to have "spell check" fix it each time I write it.

2. Second thing is look into a getting a maid.

3. Third...google search "cool looking wheelchairs"

How do I feel?
At peace.

I have been suffering in silence with SOMETHING for a very long time. And just haven't had a name. How do you tackle a nameless trial?

Now I can take Multiple Sclerosis by the horns...

In the Waiting Room

I feel like I have been
in the waiting room
for awhile now.

I have been waiting
to go to the Seattle MS clinic
for my appointment to
FINALLY
see the neurologist and
get some answers.

My waiting ends this Thursday.

September 2

I have been on a roller coaster of emotions.
So don't hang around me in the
next day or so before my appointment
or I may end up in a pile of tears
then to laughter
and then back to tears,
a couple times through the conversation!

Not sure what I
should feel, so I have
been trying them all out.

Sigh...
just filling
you in for those who
wondered if anything happened
from my lack of blogging...

Nope...just in the waiting room.

Jelly Bellies

Early this morning...

way before I would of liked to awaken....
I was greeted to a charly horse cramp in my left leg
accompanied with electric pulses shooting up it.

Shortly after I received
a numb left ring finger and pinky with some buzzing.

Next, a feeling like somebodies finger was jabbing the top of my left eye.

Yesterday it was a numb tongue and side of face and fingers that would tremor when I typed.

It's like all like eating a
bag of Jelly Bellies...



You never know what you are going to get
and some are worse than others.

Except I think I am eating the Harry Potter ones...
as they aren't too pleasant.

Staying Put

"We all face those times When our confidence fades And the path of our life

seems unclear."

I saw this quote yesterday.

It about sums up how I am feeling. I am not sure I have the strength to fight this one. Since publicly bring to the surface what has been common life for me for quite some time. All the different responses, reactions, discussions, and words sent my way.... I am more lost than ever. I really just feel like standing still. Can I do that? I know in most scenario's standing still and doing nothing doesn't work out. weight- eventually you end up ten pounds heavier and completely flabbergasted how it ever got there? testimony- do nothing and you will get exactly what you put in. Dive in, and the rewards are heaven sent. garden- leave this one alone and you wonder if your neighbor came in and sabotaged it because there was no way you left that many weeds. raising kids- not a lot of standing still happening. But sometimes you take a" break" from certain areas and before you know it you can't believe they just performed the alphabet in burps, hasn't changed their socks in 3 days, and their flimsy attempt at teeth brushing will lead them to a smile that involves 14 quartet gold caps across the front and a backwards hat...then I realize some reteaching is in order. eyebrow plucking- do nothing on this one and one morning you look in the mirror and then instantly turn to yell at your husband for not telling you the state of eyebrows before going out in public, which are taking on a similar look to your garden. your failing health- can I break the rule and just do nothing? I think I am going to try and see what happens. I am not up for the fight or challenge... I am just too tired, twitchy, hurting, dizzy and can't see too well. so it really isn't a fair fight.

Recipe for Tears

Everyone has something that makes them cry.

Mine is my body....
I think I got a lemon.

Yesterday I had the opportunity to take a fun filled ride in the
ambulance to the hospital with a severe dizzy attack that landed me on my back with the world going around like a tilt a whirl on speed...
out of the blue
while walking on the track with some friends.


Constant marry go round dizziness
is common daily practice for me these days.

a few others too....

like...

electric buzzing in my legs
like I am standing on a vibrating machine, along with the occasional body tremors popping up under my skin feeling like little ants doing the macarana. They especially like to come out and play when I am typing or trying to put on eyeliner, surprising you all of a sudden by moving my finger round about like I am some miniature mechanical bull ride for them.

throw in a...

a little face numbness every once in awhile. Feeling constantly like your face is coming out from a trip to the dentist but clear up by my eye.

then add a pinch of

memory loss, loss of focus, brain fog
giving you a funny tunnel vision feeling.
So if I forgot your birthday let say this is why.

heaps of

body fatigue and muscle weakness, you know the kind that you are left with after you completed a marathon or walked through the park with those 5o pound weights strapped on your legs...except without the benefits of saying you completed a marathon and tone abs. Dang.

don't forget the...

Muscle cramps.
Where would I be without those dang muscle cramps in my thighs?
The ones that leave consistent bruises the size of golf balls on my thighs from trying to pound them out.
Ever have one?
Oh they are just great fun... Just take a seat on the couch, then lift your leg out straight and I will check in with your in about 5 hours.
Got a cramp?
Ya, me too.

Finally top it all off with...

the lovely bathroom surprise.

What is it, you say?
As soon as you sit back down after coming from the bathroom you are greeted with
a hot poker burning in my lady parts just to feel extra peachy.
Surprise!
And you don't even know if it will last 2 minutes or 2 hours.
Surprise!

Mix it all together...

Then what are you left with?

A recipe for big fat tears.

I think it is okay to cry

and say "this really sucks!"

once in a while.

Why?

Because it is then Heavenly Father is waiting for you with open arms to say.

I know and I am with you.

I think we all have our own recipe for tears.

Just different ingredients.

And I think
Heavenly Father is waiting for us to come to Him
with what we have. Waiting to cry to Him.

Some of these things have been happening
for awhile.
some came and went
and are back again with gusto
and others are new and very scary.

I had an MRI done a month ago...

they found spots.

high signal lesions was the techno term.

But they tell you...

it may be from migraines...

You know...the ONE ingredient I DON'T get.

Or they say it may be the big

MS

or they say...

it might not.

They have
poked, prodded, tested, & medicated

for a couple months,
then left me finally...

with less blood in my veins then when I started...
having read ALL the People magazines in the waiting room wondering what is going to become of Lindsay Lohan?
and ten pounds heavier thanks to these stupid little pills.

This has been a fantastic recipe.

finally my doc says....

she don't have all the pieces yet...call me with any new symptoms
(more ingredients!! My recipe is chalk full already.)





and...
you have my complete cooperation to go to the BIG city for more...
poking, prodding, testing, and medication...

can't wait.

Love it when they can finally admit the town is fabulous for
family values
great parks
low crime
strong community.

But if you have something more going on than a fish hook stuck in your toe.
(Doc Hollywood movie)

you best be moving on.

I decided that I shouldn't be punished for their lack of knowledge

So...pursue I will.

but...tomorrow.

For today...

I will just cry.