My MS Moments

For those of you who don't know much about MS, it can turn your brain to mush in the drop of a hat.

Got a presentation you've got to give to the execs at work, you can better believe that you'll have an "MS Moment".

Wanting to have a deep conversation with a close friend, and just can't seem to put the words together to make sense. That's an MS Moment.

These moments in life are prevelant everyday. And here are a few MS moments that will hopefully make you laugh...because that's all we can do!

Yesterday: I was texting a friend of mine who sings like Beyonce (that's not a joke) and we were discussing how we needed to plan a jam session. That then led me to, "hey, you should sing some gospel music!"

Being the southern Baptist I am, I LOVE gospel music and I knew my friend wasn't much of a fan - so you could say I was attempting to mess with her.

She replied and said "well what song do you want me to sing?"

Of course, I already knew. I played an awesome arrangement at my cousins wedding of Higher Ground and my friend's voice would be perfect.

I piped back and said "you've got to sing Higher Ground"

She replied "Hmm, I'll have to YouTube that one, I'm not familiar with it."

I go into freak out mode with the following texts, and secretly began judging the fact that she didn't know "Higher Ground"

Me: What?! How do you not know Higher Ground????

Me again: it's a hymn. You should know it....(that's my condescending tone)

Me, yet again (I'm turning into my mother at this point): We are standing on Higher Ground. And I know that there are angels all around.

30 minutes later....

My friend: It's Holy Ground.

...I nearly died

Today: I'm at my desk working and needed to get up to run to the bathroom. No big deal usually...

As I proceed to stand up, I somehow manage to catch my foot in a wire under my desk and that plunges my body towards the glass wall of the office right behind me.

It was loud. I wasn't sure whether to laugh, cry or pee my pants as I looked around and sighed as no one noticed my graceful afternoon slip.

There you have it - two MS Moments in one week and it's only Wednesday.

BP MS150

Have you heard of the BP MS150? It's a bike ride from Houston, TX to Austin, TX over the course of 2 days that happens every Spring. (That's a L-O-N-G way!)

What's the best part? It raise a TON of money for the National MS Society which directly impacts the funds given to research treatment and ultimately, a cure for MS.

I participated in this bike ride during college in honor of my mom. It was such an humbling experience to cross the finish line with my brother and husband as we watched my mom cheer from the sidelines. She was the true hero that day - all we did was ride a bike. It never occurred to me that I might one day be in my mom's shoes and cheering on a rider as they cross the finish line in my honor.

This year, I have a childhood friend who is doing just that. I have known Andy Guthrie nearly all of my life and was honored to hear from him this past weekend. He was excited to ride in honor of my mom and myself during the BP MS150 2015 this coming April.

Every rider must raise $400 dollars to even participate and I'm asking YOU to help support Andy in the BP MS150 this year with a donation, a prayer or a 'Goodluck' wish.

To donate, simply click here to donate to Andy. Every little bit helps and I can't explain to you how much of an impact it will have on the MS community.

I can't tell you how excited I am to watch the cyclists cross the line in Austin, TX as they advocate on behalf of those of us who cannot ride.

Planning, On My Terms

Photo Source: strategic-planning.net

I'm a planner. I've always been a planner and probably always will be. 

From a small child, my days were planned: Monday was dance, Tuesday was piano, Wednesday was church and Thursday was twirling.

When I got into high school I began planning 'life'. From college, to career, to wedding plans, I had a plan from the get go. Looking back, I can see how "my plan" never really worked out.

You see, I had high hopes to be in the legal industry and translate in our court system...that went down the drain when my bold college advisor explained that I needed to live in a Hispanic country for 6-7 before even considering that.

Having a degree in Spanish wasn't going to get me very far, so I began "planning" a plan B.

Music was my plan B. I loved piano and thought I could be a Spanish speaking piano teacher (there's a market for that, right?).  That plan also didn't go very far when a piano mentor of mine shed some light on why she plays. It what she does to "get away" from her job and she never wanted her actual job to be piano. (Now in my career, I couldn't be more grateful for that advice so many years ago.)

I knew I couldn't be a teacher, I don't do boogers. So I went into business and slowly eliminated each major, starting with accounting until I sat intrigued in my first marketing class.

It's funny when you make plans. Mine never work out and in the end, it seems like it's for the best.

When people ask me about my plans for the future, whether it be career, family or life in general. I'm quick to lay out my exact plan and proudly say "I've got a plan".

Many close friends and family have commented "well God has a different one."

Right.between.the.eyes.

How true that has been in my life. Every twist and turn that hasn't been part of "my plan' has been the road that God has planned for my life. No matter what plans I have over the next few years, I know I can trust that God has bigger plans.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."   Jeremiah 29:11 

To Talk About Your MS, Or Not

I don't know about you, but one of the first things I want to blurt out to someone who is transitioning from an acquaintance to a friend is that I have MS. Don't laugh, I know some of you do the same thing.

It's not for the attention (we all know that stuttering and stumbling garners enough attention for every MS fighter) but rather a relief.

MS is a huge part of my life, it ISN'T my life nor does it define me, but it has really shaped me into who I am today. I feel almost like I can't be myself around someone and continue to lack the confidence needed to build lasting relationships unless I lift this weight off of my shoulders.

I spent last week in Cleveland, it was my first time to visit Cleveland and now I know why I've never been, just kidding :) But seriously, let's be honest, it was a little on the scary side. The last night I was there I wanted to visit the mall that was attached to my hotel and purchase some gifts for a few of my co-workers. Of course, I visited the souvenir shop first.

I asked the young guy behind the counter a question and he begins explaining a different store right below us that would have the item. NOTHING seemed strange about his explanation, he didn't slur, stutter or hesitate. Before he finished his sentence, he stopped and said "I'm really sorry, I had a stroke this summer and have trouble sometimes."

I wanted to give him a hug, but decided that might be a Texas thing and looked him in the eyes and said, "don't worry, I didn't even notice."

It hit me between the eyes. THIS.IS.ME. Everyday. With friends. Family. Co-workers and acquaintances. The first thing I want to blurt out is the reason I sound drunk and the reason I continue to stumble into the person I'm walking next to.

It had never really occurred to me that others didn't even notice the small things that I tend to find embarrassing. I just honestly don't want people to think that A) I'm drunk or B) An incompetent human being.

I've met several MS fighters who act like they are in the witness protection agency. I completely understand why. It seems like every time I read about MS in the news it's about discrimination and many successful professionals losing their senior positions because of something they have zero control over.

I'm working to find that happy medium, where I don't blurt it out in mid-sentence but don't hold it in and live feeling like I have the plague.

Will that ever happen? I'm hopeful.

Daily Interruptions

I have a confession. I'm an avid interrupter.

I can't help it, I have a knack for stopping you mid thought with a follow up question, opinion of my own or a completely irrelevant comment.

It got to the point of being an annoying quirk and something that I have really been working on.

At this point, I typically just gasp and throw my hands up until the person says "what?" So, obviously I've still got some work to do.

It got me thinking though, interruptions are a daily struggle. Everyday we are faced with things that pop up that we hadn't likely planned for.

When it comes to my professional life, I'm a HUGE planner and I always leave space in my content marketing calendar for "interruptions", but not so much in my daily life. I'm more of a " fly-by-the-seat-of-my-pants" type of girl.

I don't plan on hitting a big yellow van at the red light nor do I plan on getting stuck by a train when I'm already running late.

Likewise, I didn't plan on having to consider the possibility of what the future looks like in ten years. Will I be able to walk? To see? To care for my family?

Life happens to all of us, but how we respond is essential.

What if we took a step back and just took a deep breath and realize this is life. Its not easy, it wasn't supposed to be easy. However, these interruptions, or rather trials, are given to us to make us stronger and draw us closer to God.

Did you know that God gives us these trials in life to build up our endurance? I find comfort in this verse when I look at an uncertain future.

Consider it all joy my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. James 1:2-3

A Little Late To The Party

When it comes to treating MS - there are a few options available for an MS fighter, each with their own positive and negative attributes. I've been on a drug for over a year now called Copaxone - which is one of the safest and oldest MS drugs on the market. 

The problem?   It's not a pill or cream or any other easy drug to administer, it's a shot. So every night at approximately 9:30pm I use a pretty cool contraption to auto-inject the medicine into various parts of my body. 

While that doesn't sound terribly appealing - it's much better than the outcome is without any medication and it's the safest drug for me - so in my mind, it's worth the needle torture every night.

However- research has recently had a break-through with Copaxone where it is no longer a daily injection but 3 times a week injection.

How cool is that? 

While this happened a couple of months ago - I'm a little late to the 'New Copaxone' party but nevertheless I made it! 

With that - this type of progress in treating in MS is completely impossible without the monetary support that has been donated by so many members of my friends and family for various National MS Society events that I have participated in. 

I want to say 'Thank You' to all of you who have made this possible. My puncture wounds, knots and bruises will be 50% better directly due to the love and support of each person. 

While a cure has not been found and research is still looking into pretty cool ways to managing symptoms, it's exciting to be someone who is directly impacted by the endless research that the National MS Society does for our community.

As many of you know, my mom is on the same shot and will be getting her 'New Copaxone' in just a few short weeks - so we will all be doing the happy dance! 

(My very last daily Copaxone shot)

One Year Down, How Many to Go?

With the month of May coming to a close I'm reminded of how quickly this last year has went by.

Many things have changed, some good and some that I find hard to wrap my mind around, those of which aren't mentioned below :)

I realized very quickly at how stress can make an MS relapse happen in the blink of an eye with back to back flare ups last summer. After a family vacation to Destin I switched over to a new position with a marketing firm that's much closer to home.

We began settling into our new hometown and found a church with great couples that welcomed us with open arms. Having that church family in our lives this past year has been such a blessing and exciting as our family begins to build new relationships.

Thanksgiving, Christmas and the new year all came quickly and was over before we could say Merry Christmas.

I lasted the whole year with only suffering two relapses, a job change, a new church, several quick trips to see family and the continuous ebb and flow of life. What I mean by life is laundry and cooking, all while putting my superwoman outfit on and tackling the marketing world on a daily basis.

In the back of my mind, I wondered throughout the first year if my treatment was working and if my body was progressing for the worst.

The only way to know is to sit through the spaceship simulator the doctors call an MRI.

At my one year check up and MRI results, there was only progression of one new lesion in my brain and zero on my spine.

While there is progression and new white matter found, it is overall a positive result that I'm extremely happy with.

I'm grateful to all of my family and friends who have continued giving their support and prayers throughout the year. I'm looking forward to the time where I can say I used to have MS. But until then, I'll ramble along through life and try my best not to fall on my face.