Never Ever Give Up...

One thing we've learned since our daughter, Miranda, died is to never give up even when things seem impossible to get through.

August 1st was Miranda Day, the day she was born and the day she earned her angel wings.

She would have been 14.

The lesson to never give up hope, to never give up fighting, and to believe in miracles regardless of how bad things get has been tested repeatedly since 2001.

I also learned that God is ALWAYS good. Always. Even when we don't get the answer we wanted when we pray.

I prayed for Miranda to live, but she died.

And God answered my prayers by loving me through it and showing me that I can be strong and that He is there for me if I just allow him to be. I think he grieves with us and is there to love us through the hard times.

I do not believe the "bad stuff" comes from Him. Bad stuff isn't a test from God; it's just bad stuff. God doesn't give people cancer to test their faith or to punish their parents.

It's. Just. Bad. Stuff and you have to get through it, either in one piece or in several.

Because of my faith, I have learned that persevering through the tough things is possible even when it seems impossible. I choose to remain in one piece.

It's not always enjoyable...and certainly the circumstances that we need to persevere through are not desirable...

but the way to win over those tough things (like cancer) is to refuse to allow it them to win.

I'm stubborn.

Launching a passive aggressive offense comes naturally for me.

SO....now that our lives have been more....I suppose one could call it "normal"....with the recent lack of cancer treatments (TAKE THAT cANCER!) I'm trying to reclaim my life and #TakeItBack.

SOO....I decided to do something really not so smart, illogical, and pretty much absurd...

and I signed up for a half marathon.

The why is simple. I have Multiple Sclerosis, I am a cancer survivor, I've been a "momcologist" for almost 8 years, and I spend my days fighting for childhood cancer research and awareness. Oh and I don't run.

Seriously....8 months ago, I couldn't even walk down the stairs without gripping the stair rails and moving to the next step one foot at a time while squinting in pain.

So maybe it's not that simple...

but it IS passive aggressive and totally stubborn.

I wanted to do something that would be really hard and seemed impossible...and this sure fits that bill.

SO to keep myself accountable, I posted on Facebook that I was going to do a half marathon. There was no way to back out after I posted...I mean it's Facebook...people only post things that are 100% true on there.

Notice I didn't say I was going to "run" a half marathon, I am going to finish one but my gait has been termed "r/alking" by one of my dear friends, Stacy.  Mostly walking mixed with a little running.

I'm so gonna r/alk that half! ;)

Two of my friends, Cari and Shelley, made a t-shirt for me that I will wear the day of the marathon. The front is an image of my biggest reasons to #TakeItBack...Miranda, Braden, and Zach...my three babies.

Okay, please don't tell Zach I said baby because he's a seventh grader and that would result in much grumbling and grouching.... And I don't have time for that...for the 100th time today.

Sigh!

The back was inspired by a t-shirt my friends and I had a few years ago for an event we called "Trail of Beers".  It had like 20 bars listed on it and there was a checkbox beside each bar. The goal was to get each bar checked off in one day.

And you had to drink a beer at each stop...

except for the DD....

and I was the DD (smart me)...you automatically got a checkmark just by getting your passengers there.

This time, there are no bars listed officially on my shirt...

(although I'm fairly certain there will be one soon after the finish line)

The final box gets checked off after I cross that finish line.

R/alking or crawling....

Every day I write the name of a childhood cancer hero or angel hero on the bottom of the back of my shirt and I think about that hero while I am running..

When I feel like it's getting hard and like I don't want to keep running, I think about that hero and all that child has gone through.

The keyword there is "Child". These are kids who should be focused on swinging and running and playing, not fighting cancer.

And I push through my pain because it doesn't even begin to compare to theirs.

I'm not very fast...and I'm certainly not always graceful...

Yesterday was the perfect example of how "not" graceful I was. It was storming that morning so I went to the gym to r/alk my 3.5 miles on the indoor track.

About mid-way through mile 2, I felt myself begin to fall.

The last time I fell, I broke my arm....so I was eager to avoid that.

Instead I threw myself into a baseball type slide on my hip. Jarod Dyson would have been proud!

I was safe and I got right back up and started running again. Unfortunately, the "slide" occurred right behind the television sets in the gym...which is where every single person doing cardio is looking.

I was totally on center stage!  Awesome!!

I recovered and was doing well when somewhere in mid-mile 3, I felt myself begin to fall again but this time my weight was shifted all the way forward resulting in a less graceful fall looking more like this:

Except this guy looks better than I did.

I got right back up and started running again, but I was cracking up. And it was right in front of the free weights section of the gym (I call it Muscle Beach). It's the most testerone ridden corner of the gym filled with buff people doing buff people things and I totally wiped out flat on my face right in front of the buff people!

Like.A.Boss

I am physically unharmed, but I did put a hole in the knee of my favorite capri workout pants so I'm a little messed up emotionally about that.

It's my MS...I have a terrible sense of balance on a normal day as a result of my MS and heat is one of my triggers. We are having really hot weather in Kansas right now. What? Hot weather in Kansas in August?? ;)

I just need to think about my feet and my balance more when I'm running...

rather than jamming to Disturbed.

My half marathon journey is likely to be more falling than flying but I'm going to keep going and Never Ever Give Up!

I'm taking my life back...even if it does result in falling.

I'm going to keep getting back up. All three of my children are fighters and the names of the heroes I write on my shirt are fighters. They inspire me.

My goal is to honor them and raise awareness through this journey. It is NOT a fundraising effort, it's just about fighting like these kids.

Some of my amazing friends put together a video about why I'm running. A huge thank you to some amazing guys for this beautiful video. We will keep making some clips so you can hear all about our kids.

Special thanks to  Tug McTighe, Jon Hardesty, and Matt Loehrer at Callahan Creek and Brandon Green at Evergreen Images for the video!

I hope you like it!!

The YouTube link is: https://www.youtube.com/watch?v=P4wsVeKl9qo

Today my training schedule says that I can either run or cross train.

I think I'll pick cross training and save my second favorite capri workout pants from certain disaster!

One thing I know is that I'm not going to quit....

No matter how many pairs of capris I have to buy! :)

TAKE THAT cANCER!

Multiple Sclerosis...

Yup, I have MS! :)

I was diagnosed in January of 2000 and I have been giving myself shots of Betaseron every other day since then (well, except for when I was trying to get pregnant or actually pregnant) :)

Lots of people ask me what MS is and the easiest way I can explain it is by using the analogy of an extension cord.

The nerve endings in your body are a lot like an extension cord. They carry the messages/electrical "sparks" through them to their intended source to do an intended job like moving your leg, or speaking, etc.

When you have MS, the orange covering on the extension cord wears thin and the messages through your nerve endings start getting lost and either do the wrong thing or do nothing.

Over time, your body heals those thin spots (if you are lucky and have a "good" kind of MS like I do...I have relapsing/remitting). The problem is that each time your body has to heal those nerve endings, you build up scar tissue and that acts like a brick wall for nerve synapses and then things don't heal, which is what causes irreversable damage and loss of motor functions.

You can have "lesions" in several places in your body including your optic nerve, spine, and brain. I'm one of the lucky ones who just has lesions on my brain. Every 2 years, I have an MRI to measure them and see if they have grown.

They have changed a little, but not bad considering that I didn't do my shots very often while Braden was in treatment at the hospital. They make me VERY sick (flu-like symptoms) so I administer my shot right before I go to bed and sleep through most of the worst of it. I do have to take Ibuprofen the next day for extreme headaches and body aches but every other day, I'm good! :)

It's a good trade off. I get to remain mobile and only feel like crap 3-4 days a week as a result. I'll take it!

I have two triggers for my MS, fatigue and heat. I didn't get a lot of sleep while Braden was inpatient for that year and a half, and I didn't want to be sick all night while trying to take care of him so I skipped them a lot. Yea, my neurologist knows and she wasn't pleased but she couldn't blame me. :)

The heat trigger is why I do NOT enjoy summer!!

At all!!

Last summer in Kansas, it was extremely hot and I was in a lot of pain and I was exhausted most days.  It's the first year I've really been that miserable. We detour every day, at least one detour and when it's that hot, we have to detour inside which is a downer. It all works out, but still...frustrates me!

Winter, fall, and spring I'm much more comfortable!

There is the little issue of my balance...it sucks.  Plain and simple. 

I fall frequently and when I tried to go out dancing with some friends, I had a hard time doing Cotton Eyed Joe (which pissed me off) but as long as I don't have to walk a straight line or stand on one leg, I'm pretty much okay!!

Okay...I'm not but I would like to THINK I was...I really have a hard time with my balance and I'm sort of like a weeble...

except I DO fall down!! LOL!!

I only have to visit my neurologist once a year! WAHOOOO!!! :)  That means I'm on the "good" list!

There are a few things that affect me with my MS but for the most part, you wouldn't know I had it!

The way I knew there was something wrong is that I had a band of tightness around my waist, it felt like someone had a great big belt around me and was squeezing it as tightly as they could.

Oh, and...my entire lower body went numb. :) 

I thought it was my back so I went in for an MRI and they told me two things.

1. My spinal column was 90% compressed from a herniated disk and I needed surgery right away. I had surgery 3 days later.

and

2. There were lesions on my brain that indicated I had MS.

Crap!  I could have done without the second one! :)

Brian and I were dating at the time, and I remember telling him that I would completely understand if he didn't want to sign up for this.

He stayed in the game....  :)  Actually, the first neurologist I had explained what "she" had and what "her" options were to Brian while I was sitting right there. I explained we were dating and I was right there...in the room...and after we walked out of that meeting, I found a new neurologist.

Smooth move Dr. Igit!! :)

Outside of the side effects of Betaseron, the big red welts each shot leaves for about 3 weeks, the nastiness on those hot days, and the fact that my balance completely SUCKS, I'm all good!!

I'm VERY lucky!!

VERY lucky.

My neurologist (who I LOVE) said not to even look at any of the scales that show the stats about what will happen to my mobility in the future, she says I'm going to blow them away.

I'm with her...MS is not going to win!!

HOPE! :)