Monday, September 13, 2010

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.

Saturday, September 11, 2010

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.

Thursday, September 9, 2010

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?

Thursday, September 2, 2010

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...