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.

Fatigue: A Daily Struggle

The National Multiple Sclerosis Society states that fatigue occurs in 80 percent of patients who suffer from multiple sclerosis. In hot or humid weather, fatigue may increase throughout the day.

I live in Texas - It's hot and humid every day so you can bet that I'm screwed on that one. 

Fatigue. It hurts, it's unbearable yet somehow we all seem to open our eyes every morning, slap a smile on our face and take on the day (with the help of a few cups of coffee).

If you hear anyone with MS say "Man, I'm so flippin' tired" that doesn't mean they went to bed at 2am and woke up at 6 to take on the day. That usually means you held your eyes open until a little past 8pm and fell asleep while watching The Voice. 

I'm going to attempt to explain what fatigue feels like to those who don't have MS, or any other autoimmune disease.

Fatigue makes your head hurt. Every.Single.Day. You can only take so much Tylenol before needing a liver transplant. (If you're a member of my family, you're on the short list if I ever need one). 

Fatigue makes you nauseous. This one sounds strange but you are so tired that you feel like you need to vomit. You might be out with friends for dinner when nothing sounds appetizing and you just need a double shot espresso from Starbucks to keep your eyes open.

Fatigue makes it hard to concentrate. If you work a full-time job as I do, you understand this all too well. Those times when your vision goes blurry and you just need to give your head a shake, say a quick prayer and re-focus? Happens all of the time and there's absolutely nothing you can do about it.

Lastly, fatigue makes you unable to sleep. Funny, right? Many people with MS who all suffer from fatigue suffer from insomnia as well. The nights where you just need an extra hour you end up tossing and turning for the entire night. 

It's difficult to wrap your mind around if you haven't experienced this, but sometimes it's truly difficult to just 'Do-Life'. 

The hardest days for me are Thursday and especially Friday. I've given all I have to push through the beginning of the work week and have nothing left. Exhausted doesn't even touch how I feel on those days.

So how do we beat it?

Some say exercise which I think helps my body in general but I definitely feel exhausted afterwards. 

Some say to eat like a rabbit (vegetarian) which might help battle fatigue.

For me? I haven't found a way to manage it and I'm not afraid to say it. I look forward to weekends where I am able to save up energy for the next week and also spend way too much money at the local Starbucks. 

Who knows, but at this point, it's 5:28pm and I don't even think supper time is worth me staying up until 6pm for, don't judge. 

Acceptance

Is it something that we ever fully grasp after being diagnosed with a chronic disease, or any disease for that matter? 

My experience was different, I wasn't surprised by the diagnosis and knew the words were about to flow from my doctor's mouth but I don't believe I have fully accepted it, and I don't think I will ever be able to. 

I think as the years pass on and the disease continues to limit your daily life, you go through separate stages of acceptance. 

I don't know what it's like to be contained to a wheel chair or dependent on another person. I don't think I've even 'accepted' that my disease can put these constraints on my life at any given moment. However, because we are fighters, when those times come we pull up our boot straps and slosh through the mud. It could take a week to years to be able to accept the true nature of our disease.

So what can we hope for while dodging the curve balls we see coming our way?

1. Hope for a cure - while this is something I can't do with the knowledge I have, I do have the ability to raise awareness and donations to support organizations in finding the cure.

2. Hope for a blessing - While it really just sucks that we have been dealt the cards we have, being a blessing and an inspiration is something to hope for. People with and without our disease watch us to see how we react to each circumstance, why not use those circumstances to be a blessing or an inspiration to others.

3. There's Hope through Christ - As a Christian, my faith is a big part of my life and my outlook on this disease. When my body does crazy things or I sound like a drunken' nutcase, I know that one-day my body will be perfect. How wonderful that will be and gives me great hope as I stumble through this life. 

Even though we probably won't fully accept our diagnosis, we can have hope through each stage of acceptance.

Love, Sweet Love

Valentine's Day is something that my husband and I haven't made a huge deal of throughout our relationship, however, our 3 year anniversary is next week, so I figured it would be fun to write about our story.

I was very involved in the music ministry at my home church throughout my entire life, and the music minister at our church was my husband's step dad. I played piano several times with him and he made comments each time about his "twin boys". Of course, I laughed it off and never really thought much of it.

During the summer after graduating high school I was involved in our college & career ministry, called RedZone. On a random Wednesday night, Cody, my husband showed up for Bible study. We exchanged email addresses and that's how it started. His step dad takes the credit for getting us together!

We dated all throughout our college career and married when we were 22 years old. Next week marks our third anniversary and I couldn't be more blessed to spend my life with one of the greatest man I have ever known.

I'm so thankful to have his constant love and support as we "do life" together. I can't wait to see what our future holds from careers to children, I'm excited to spend these experiences with him!