A Day in the Life

Today is the end of MS awareness week and I wanted to capture what life is like for me, a young person living with MS.
Once a month I get called by a company who arranges for this box to arrive on my doorstep. Oooh! Is it something fun?

Not really. It is expensive though. $2000 expensive.

 

There are 8 different disease modifying drugs for those of us with MS. However, right now I can only have one. Why? Well, my insurance only covers 50% of the cost which would leave me at over $1000 out of pocket each month. The company that makes Betaseron is kind enough to provide me with assistance to cover the remaining amount for 10 months out of the year. My neurologist's office was thoughtful enough to save samples for me to get me through the other 2 months. The other companies couldn't guarantee assistance for anything over a year. I am beyond grateful to have Betaseron give me their assistance.

Speaking of 50%, Betaseron reduces my chance of disease progression by that amount. I wish it was higher but 20 years ago there weren't any drug options for MS so it's better than nothing. Researchers are still learning so much on drug options for MS, it is constantly improving.

I am always fearful of it not working because my options are so limited. 

Every other night I give myself an injection. Some nights it isn't too bad. The nights when you are tired and just want to crash into your bed it is a pain. Lucas also helps me for the hard to reach areas like my arms. Not fun when you love each other. Not as bad on the nights we have disagreements because he can take his anger out on me I guess. Above on the right is my auto-injector so I don't have to do it free hand and all the bits and pieces I have to mix together. I rotate between 24 different areas so my skin and tissue don't become to cranky and damaged. What does cranky bruised skin look like?

Imagine these all over my body. It did put an end to my bikini career. That was a good thing.

Needles, needles, needles. I have many sharp containers full of needles as they aren't easy to dispose of. I worry about having them in the house with small children. I just discovered I need to fill the containers with sand or kitty litter, duct tape them up and throw them away. Creepy.
When I travel I have to plan carefully and make sure I have everything I need on the road.

A lot of work for something that doesn't give me a cure or completely stop the progression of my disease. How do we know it is working? It just depends on how many symptoms decide to appear. I have an appointment with my neurologist once a year where she tests my neurological responses. Every other year I get a costly MRI on my brain to see if there are any new areas of scaring. My spine has also been affected but I don't need that scan as often through my life. Since symptoms can come and go and increase with intensity, it is important to document all changes I experience.

What can turn on symptoms? Stress, exhaustion and unhealthy habits are major triggers. I can feel numbness, cognitive issues, aches and painful sensations in my hands, arms and legs at any point in time. Some days and weeks I don't feel much of anything.

The uncertainty of the disease creates a lot of stress and worry.



Every morning I wake up and hope that my vision is intact and my legs will carry me throughout the day. Does that stop me from getting up and exercising, playing with my kids, working hard at my job, taking care of my home and spending time with my loved ones? Nah. When I think of myself this is what comes to mind:

Training and running a 10k race for the first time with friends.

All of this possible worry and doubt makes me appreciate what I AM able to do every day. I never take my health for granted and I always focus on what I am able to control in my life. I see how many others with MS have greater health challenges than I do and I'm grateful for what I do have the ability to do. Even if I do end up in a wheel chair some day, I think I can pull the look off:

Of course it helps to have all your loved ones cheering you on.

Consider joining my 2012 MS Walk team on Saturday April 21st or donating towards my $2000 fundraising goal. Click here for more details on my team page: http://main.nationalmssociety.org/site/TR?px=5955847&pg=personal&fr_id=18108

What all the cool kids are doing

It can be hard to keep up with the times but it can be even harder to remember what just happened in our lives. I felt the need to document what the current favorite activities are around our house so we don't forget these cherished times.

Eliza is a little obsessed with watching the news. Specifically Brian Williams. When the 5 o'clock hour rolls around she runs into her room and brings out her little red desk and chair. Pen and paper in hand and she is ready to start reading the news. She even gets giddy when her buddy Brian comes on. Apparently she got a little frazzled last night when he came on unexpectedly for a political announcement.
See first hand what I'm talking about.  Can you tell the hurricane was in this news cast as you watch her arms flail around. Listen closely as she takes it back to "Brian" at the end.

Another favorite past time has been beauty parlor. Anyone is subject to a hair cut around here.

What has Mr. Anderson been up to? Well, what hasn't this kid been into. Or onto. Or taking out. Good grief he wears me out each and every day.

Good luck trying to figure out what he was trying to do here

Whenever I do laundry I have to go through Eliza's dirty clothes bag because...

 he feels that ALL of her shoes and puzzle pieces belong in there too.

 He loves to get into our room and climb on Lucas's night stand so he can turn on his clock radio and rock out. The next obvious step is to climb from there to our bed and roll around. Favorite drawer in the house? The only one in our bathroom that doesn't have a baby proofed latch. He grabs our toothpaste and runs into our closet to sit up in a chair and squeals with delight. My nightstand also has the remote for the TV, fan and chapstick. All will be his in a matter of minutes. Repeat this entire process several times. If you kick him out of our room and he doesn't like it then he puts his hands up on the wall and bangs his head into it. Payback for Eliza being such an easy toddler? Heck yes.

He does have his extremely sweet moments too. Anderson's vocabulary has taken a huge jump in the last month. Walk into a room and he will point out all the important things you need to know:
"Ca-Ca" = garbage
"Cock" = clock
"Hawt"=hot fireplace, picture of fire, oven
"Buwd"= the birds in Eliza's classroom

When I went to pick up Eliza at school this week, he got down on to his belly on the floor and peeked underneath the bathroom stall in the classroom like a dirty old man. He looked back at me, pointed repeatedly and loudly said "Potty, potty, potty!" All the kids circled around him and laughed. I was ready to leave him there for the rest of the day.
He also likes to play a mean game of Peek-a-boo. Ask him "Where is Anderson?" and he slaps himself in the face with his yummy chubby hands only to quickly reveal the treasure you are looking for. He cracks up every time you act surprised to see him.

What else have we been up to?A first haircut for Anderson. A new fish tank. Kindergarten Orientation. Having 1/4 of the fish die.

 A little fun in the snow and a lot of going across the street to our park.

 Slow down kiddos. You are growing up way too fast. xoxo

We wish you a warm and fuzzy Christmas

~Christmas Vacation~

 "Clark, Audrey's frozen from the waist down."

"That's all part of the experience honey."

You know how you get an image, idea or fantasy in your head about how you want an event to turn out. Sometimes often the reality of those ideas morph into an event that isn't quite what you were hoping for. The weekend before Christmas we didn't do anything wintry, holiday-ish or "Christmasy". I can't even remember if we were sick, lazy, busy or all of the above. I realized with having small children who are beginning to form long term memories of our holiday traditions, I needed to plan something fun!

Did I mention I was also starting to feel guilty for not having a picture of both kids with Santa? Eliza, Grandma Doris and I went to the Festival of Trees and had breakfast with Santa but only ended up with one quick picture:

I mean it when I say quick. There were about 100 other kids waiting to meet the big jolly guy and I was afraid to get a picture behind the BSU tree so I kept moving us to find the perfect background. The line to sit and tell Santa what you wanted was an hour long. No thanks. Big mistake as Eliza kept reminding me afterwards that she didn't get to tell Santa what she wanted because the line was too long.

Enter: guilt

So....I needed to mend her poor childhood and find Santa. Two days before Christmas. I thought our local Botanical Garden Light Exhibit would be perfect! It is a huge beautiful display, free hot drinks & cookies, fire pits, a train exhibit (what Eliza wanted for Christmas) and of course a chance to sit down with Santa. Lucas even said yes immediately when I pitched the idea. Perfect!

Well, except for the weather. It was averaging 17 degrees at night with not a drop of snow. Flippin' cold. I thought it might keep the people away but I was wrong. Traffic was backed up several miles away to the garden and then line to pay took almost 25 minutes. Did I tell you it was 17 degrees out?

Are you ready for our adventure? Here we go:



One quick picture of a light display. The only one I got because it was so cold I didn't want to take my hands out of my gloves. Unlike Anderson who insisted on NOT wearing anything over his hands.



Anderson lost his patience while we were waiting in line to pay. Once we got in, began searching for Santa and then had to wait in another line to talk to white bearded wonder, Anderson was certainly done. He only wanted to walk around by himself and cry.



But wait! It was finally time to see Santa! Well, Anderson was still crying and it had nothing to do with being fearful of Santa. He was cold and ticked off. Despite Lucas and the others telling me to forget it, I was determined to get my photo of the kids with Santa. I tossed the camera to Lucas and marched up to dump my kids on the lap.

This photo opportunity lasted exactly 4 seconds...

as Anderson bawled and slid his way to the ground.

After making it to Santa so Eliza could enthusiastically tell Santa she hoped and dreamed for a train set, I felt it was time for the next big event! The Train! We couldn't find it. I searched up high and low around the garden and then we navigated our way through the crowds until my mom finally stopped to ask directions. Don't forget it was 17 degrees and we have a crying toddler on our hands.  We finally made it though to the train! Eliza takes one disappointed look at it and says "I thought you could ride on it Mommy!" Dear god help us.

After watching the train go round and round we decided quickly it was time to go. Didn't it seem like we just got there? I thought about all the cute family pictures people had been posting on facebook from the visit to the garden lights. Darn it. I was determined to drag these people around and take some pictures now. We got Anderson to stop crying for 2 seconds to take this picture. Even though it looks like Eliza has a condom on her head it doesn't look too bad.

Oh, these two sweet people (my mom and Larry) were the best sports to hang out with us. They were even silly enough to say they had a good time.

Before we marched back out I did negotiate a stop by the hot cider and cookie stand. With the warm drinks taking the stress and edge off the evening and the cookies freezing in our hands until we shoved them into our mouths, we headed back to our cars. Filled with warm memories of course.

Happy Holidays 2011

Tis' the time to reflect back on the year that is heading on out and embrace the next one! I have to say 2011 was mostly an uneventful year for us. In a good way. We had:

•  Yet another fine Spa weekend 2011 with the ladies 
• Our baby learn to sleep through the night.
• My family and friends helped me raise almost $2000 for the MS walk!
• One crazy week of summer birthday celebrations and a family reunion.
• A diagnoses of "exercise induced hives" but I didn't let that stop me and went on to run 3 big races.
• Starting back on my MS meds
• My longtime friend, April, moving her family back to Boise after 15+ years
• That baby learned how to walk after 16 and 3/4 months.
• Lucas got to hang out and drive around rockstars. Well, they used to be big stars at one point.
• The mighty hunter came back empty handed but thrilled to go out on the hunt.
• Time with all of my family this summer.
• Taking our complete family to Red Fish
• Being nationally recognized for the work we do with local families at our Luna Mom's Club
• Eliza trying out dance and soccer
• Erik having a clean MRI
• My dad's wife, Karen, beating breast cancer!Yippeee!

Here are some of my favorite photos to capture the year of events:





My fabulous team of family and friends. My goal is to raise $2000 in 2012 for the MS society!

 

Capturing the best little giggling girl ever



Soccer with her buddy Luciya



My favorite picture of the year!



Sweet cousins



Anderson playing the role of "ET"



Our annual summer fun with Dana, Gaizka & their family
  
 



Lucas lovin' some rock & roll with Joan Jett









My favorite boys in one of my favorite places in Idaho








 I feel complete since we were able to take the kids to Redfish Lake where we were married

  



Two cute kids pretending to be at a picnic



My oldest brother Keith with his kids Morgan & Logan



Who wants to stand still for all these pictures

My brother Erik, Katie, Anna, Charlie & Bennett



The whole family-from my dad to mom and my siblings in between



Race #1-See Jane Run 5K



Race #2-Dirty Dash 10K
Who would have thought the best part was chugging a beer half way on top of the mountain!

 
     

Race #3-Barber to Boise 10K

The closest Lucas got to "Deadliest Catch"

O.K. now those are some sweet, cute and lovely pictures.  Life isn't perfect though. What about the funny or awkward ones that make you laugh but don't often make the final cut? Here are my favorites from this year:

 Awkward family photo

Probably wish you hadn't sat down next to him now

 Look! Here comes Dana on a paddle boat...wait a minute. Here is a man who should NOT be wearing a Speedo carrying a butterfly net. Random.

 It is really hard to have all the kids looking at you smiling.
It is even tougher to have just one of them crying their eyes out.

Thank you to everyone who sent us lovely Christmas cards of their beautiful families this year. Thank you to all our loved ones who made our year fun, entertaining, and joyful. We are so grateful for those who support and complete our family and circle of friends. Much love and Cheers to 2012!