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.

Day Two- Liberation Day

(this picture is showing how the vein isn't flowing,
in fact it started to break off and make alternate routes
and highways in order to get more blood flow.)

So the morning went fast,
and I don't remember much up to after I woke up.

I learned my lesson from yesterday
and asked everyone wearing a badge

when were my drugs coming??

So I will start there.

Dr. Arata found that my left and right jugulars were blocked/narrowed/ or stenosed. My right being the worse.
He said a normal vein size is approximately
19mm

Mine is 8mm.

Yaaa, now I know why I didn't score higher on my ACT.

He was able to snap/pop/destroy my left jugular valve.

But he wasn't' sure if he got the right side as it was so much smaller which made it thicker and harder to snap.
He said he might of or might not of.

Because it is a guided procedure, the only way to know is by feeling it snap or hearing it...

I know, gross eh?

So the bad news is within the next two weeks, if my symptoms all return we know it didn't snap open and I will need to return to get the procedure again to try again to get it to break.



These are pictures of the balloons pumped up in my vein.


So the verdict.

I feel flipping fantastic.

Leg Pain:
Mostly Gone

Fatigue:
Gone

Brain Fog:
Gone

Bladder "Issues"
Mostly Gone

Tingles
Mostly Gone

Limb Weakness
Gone

Foot Tremor
Almost Gone

Morning Eye Stabbing
Gone

Intention Hand Tremors
Gone

Heat Intolerance
Gone

Burning Skin Neuralgia
Gone

I feel like I am 15 years younger. I just feel "normal" again, and it feels amazing. I do have a doosey of a daily headache but we heard is from the blood thinner injections. He also said it could take months for your body to see all the positive symptoms.

I feel so blessed.