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!

Exhaustion

Exhaustion, fatigue, and longing for the sweet cushion of your bed is something all of us wait for every afternoon. I felt it this weekend, like I had never felt it before.

Saturday was a big day for our family, my sweet nephew celebrated his 4th birthday! It was an exciting time for his friends and family to gather around him to celebrate everything he means to us!

It was a fun time with family, but after the party, I couldn't keep my eyes open. My head was throbbing and I couldn't make myself do anything for the remainder of the day.

Used to, I could attend a birthday party, run to the store, fill up the gas tank, and get home to conquer the mammoth of laundry that (still) needs to be done. However, on Saturday I was absolutely exhausted. I was, what we call 'pooped.'

Isn't it frustrating now that the energy is sucked out of you by doing the simplest of tasks? It aggravates me to no end to realize that I can't go to the movie or out to dinner but just need to chillax on my big man chair for the remainder of the day, of course wearing PJ's. 

However, I think it's hard to spin these situations around while you're dragging yourself through the exhaustion.

Yes, I felt like an 80 year old woman after the birthday party, but praise God I have legs that move and the ability to walk around and enjoy the birthday party. Who cares if I didn't go to the grocery store or do the mounds of laundry that haunt me when I walk into my bedroom? Even though my lunch consisted of only green beans today, it's really not that big of a deal.

The point is that it's a blessing that I had a few good hours to enjoy his celebration! I always make myself look for something good when I feel like MS is knockin' me around and laughing in my face, who's with me?

Attitude is Everything

I'm new to the MS community, with being diagnosed just last year, but I know one of the main tools we all have is our attitude. I find myself 'unfollowing' MSers on Twitter, because nearly everything out of their mouths, or rather 'Tweets' is negative. It drives me up the flippin' wall!

Newsflash: MS doesn't kill you.

I've watched friends and family struggle to say good bye to those they are close to. Most of the time it's from a struggle with cancer or a sudden accident that takes someone too soon from this world.

MS doesn't do that. We aren't counting the days from our diagnosis to fill as many items on our bucket list. Yes, we might be limping, falling, or mumbling while going through life, but thank God we have the opportunity to finish life.

Maybe I'm on a soap box, maybe I'm offending you, and to tell you the truth, I really don't care. If I'm offending you by my rant, please take a look at yourself and understand that attitude is everything in this uphill battle we fight every day.

Here's how I stay positive:

I'm thankful for the things and people I do have. I'm thankful for the support system that constantly surrounds me day to day.

Turn lemons into lemonade. I've heard the saying "when life give you lemons, stuff them in your bra to make your boobs bigger" - I love it! It make me laugh and really puts things into perspective. I only stuttered 3 times during the meeting at work today, better than falling 3 times! (BAM, that's how you do it).

Reward yourself with a nap. I work a full time, corporate job and then come home and cook nearly every night. I consider myself an overachiever if I'm able to do a load of laundry during the week. On Saturdays and Sundays, I snooze during the day. I rest, that keeps me happy and motivated me for the next week.

Lastly, and the most important thing, I exercise. I know what you are thinking, this is usually a depressing activity. But for me, it works. It usually relieves any headache I've been fighting the whole day and gives me a ton of energy. I walk or run until my body yells at me! Believe me, this is the best way to strengthen your outlook on life. I also pray during my runs, usually that I don't die (seriously) but also thanking God for the strength and ability I have to run. It drives me to finish and helps with my attitude for days to come.

Sorry, but I'm not sorry for my rant on attitude. We are surrounded by bad news every day, we need to support one another instead of constantly posting and tweeting negativity.

5 Sources of Vitamin D

Vitamin D is something that most Multiple Sclerosis fighters have to take in supplement. I take 5,000 unites of Vitamin D a day. I couldn't tell you if it works or it doesn't, but I always try to soak up the nutrients in what God gave us.

Here are a few ways to increase your Vitamin D intake everyday.

Soak up the Sun
I know, we aren't supposed to get too hot or else things start feeling funny, but soaking up the sun is the best way to get these vitamins. Here are the best ways to do it while staying cool:

• Take a Swim
• Sit in the Shade
• Sit inside but a window
• Use a portable fan
• Purchase a FroggTogg - These are amazing!
• Include short increments of inside/outside to stay cool

Mushrooms

I LOVE mushrooms! I can't get enough of them. I prefer them cooked over being raw in a salad, but I usually always have them on hand. Some of them are a source for what MSers need, Vitamin D. Below outlines each type of mushroom and the units of Vitamin D in each. 

Source: Mushroominfo.com

Fatty Fish

I don't eat much fish, I eat shrimp and shell fish, I just don't cook much fish. I love fried fish (freshwater bass), but I just can't fill up on a tilapia filet, not to mention, my husband usually isn't too thrilled when I do cook fish for dinner. He's more of a meat 'n potatoes type of guy. 

However, there are some ways to get Vitamin D by eating fish. These include canned tuna, salmon, sardines, and mackerel. 

Sign me up for the canned tuna, who doesn't love a tunafish sandwich? 

Fortified Foods

These include foods or drinks that have Vitamin D added to them. Think about Milk, Cheese, Cereal, and orange juice. When including these in your diet you definitely need to check the label and make sure that there is Vitamin D added to these products.

Supplements

This is what I take every night, and probably what many of you take, but also consider fish oil and cod fish oil under this. All of these can be taken as a supplement and will serve as a way to get the Vitamin D that your body really needs.

We All Have a Story - My Mother's Story

This is a guest post from my mother.

My daughter has been desperately attempting to have me write for her blog, so I finally put everything together. We all have an MS story and I wanted to share mine with you.

I was around 42 years old when I had come down with the worse case of pneumonia I had ever had. I was sick for days and unable to even care for my family. I had never been this sick, but I pushed myself to drive to Houston (nearly a 2 hour drive) to watch my daughter perform in the marching contest.

I never missed a performance and figured that I would be able to endure it. I was terribly wrong.

Soon after my bout with pneumonia, I had began tripping, falling, and breaking numerous dishes in the kitchen. I blew this off as being clumsy and needing to pay more attention to picking up my feet. I actually never put 2 & 2 together until after the MS diagnosis, my clumsiness wasn’t my fault at all, thank the good Lord!

A few short weeks pass by and the tingling began, you know the kind that you pray to go away? The kind that you try to move your arm in every position just to get some relief? Yeah, that’s what I’m talking about. However, I didn’t let it phase me, I am an active parent with two children, a sophomore in high school & one in college. I really didn’t have the time to worry.

Self Diagnosis: Pulled Muscle

I just told myself, this is age and I can’t let it get me down. Until, my hand began to get worse and worse, so bad that it drew up into a fetal position.

Of course, my family started to notice and encouraged me to see my doctor. (In the back of my mind, I knew something wasn’t right, but I was never prepared for what they told me)

Starting the dreadful process of visiting your PCP, being referred to a neurologist to be quickly sent to get an MRI because of the reality check he had given me.

A stroke? Wait, I’m 42, that’s impossible. I had made myself believe it was a pulled muscle.

What a blessing that the MRI results came back with no indication of a stroke, however, there were some other issues, and that’s when it became even more real.

Something was wrong, something that they didn't know yet. The feeling of the unknown in itself can scare you half to death. 

After going ‘round & ‘round with my insurance company, I had to have 3 MRIs of only a certain amount of inches at a time, as that is what the insurance would approve.

The day finally came for me to go back to the neurologist and visit about the results. We all know that if the results are good, they tell you over the phone, but if they aren’t they make you come in. So I knew I wasn’t getting any good news. That’s when he said it, “It looks like MS.”

I looked at him thoroughly confused and asked quietly “What is MS?”

After giving me the scientific run-down of this beast of a disease, I began the next step in the process where they test you for everything under the sun to rule out things like Lupus, Celiac, and third-world diseases that no one has ever heard about…

Because he was still uncertain, I ended up having a spinal tap, which was no picnic. Can you imagine the fear of not moving while they stick a huge needle into your spine, it’s probably one of the worse pains I have ever felt. 

This came back positive for MS and I was referred to my current MS specialist in Houston. It’s been nearly 9 years since my diagnosis and I fight this disease every day. Some days are good, and some days I just need to sleep.

I keep my mind focused on what is important in life and thank God everyday that MS isn’t something that will kill you, just a hurdle (or two) you must jump every day. 

Introducing...My Sweet Mother!

I just can't contain myself, I'm so excited to share with everyone that I have finally convinced my dear mother to write some blogs on topics that I just can't cover. She has some experiences that I haven't yet had and I want her to begin sharing her journey on the blog!

Everyone clap for her, it takes alot of courage to write something and throw it up on the interwebs! 

You can begin to look for her guest posts soon. They will cover a large spectrum of topics including the below points.

Her MS Story - Everyone's Got One, So Let's Hear It! 

The Switch - Taking a Chance with Gilenya 

Ways that She copes in a Super-Stressful Job

MS & Horses - This is so interesting to me, don't miss this post! 

Older Kids & MS

Copaxone - The Scary Side Effect

I can't stress to you how cool this is going to be, we are something pretty rare within the MS community. We are going to do her perspective/my perspective of some stories, so stay tuned! 

#JustBeatIt

Is it me or does a good Michael Jackson song put you in the kind of mood when you just want to get off your butt and clean the whole house? Maybe not, but you like his music right?

I just love MJ, he makes me want to roll my windows down in the car and sing at the top of my lungs, and I can't get enough of his Beat It song! 

Man, I love it! 

The more I think about it though, I want that to be my motto, what I live by everyday. 

Just.Beat.It

There are definitely worse things that I want to say, but this is light and helps keeps your perspective while fighting MS. 

Just Beat It MS! Get out of my way, I have a life to live! 

But, it could also be for those times when fatigue is eating away at your body like the plague, you know the days when the dishes have been sitting in your sink for 4 days and you just pray nothing is growing. Take a stand and #JustBeatIt! 

What a great attitude to have in life, we can get through tingling, fatigue, those blasted headaches, and just life in general. 

I can beat it, I can thrive with this! 

So, add this hashtag to your Tweets, Facebook posts, and G+ status - It's happening! 

We will BEAT this one day at a time! 

Life's Not Fair

I sat in my Sunday School class listening to our teacher go on about how life's not fair. I wanted to stand up and scream at the top of my lungs kicking and screaming about my life. I have so many personal examples that I could give of how things aren't fair. From sudden deaths to selfish affairs, sometimes life just sucks! 

My MS is not fair. I'm 25, why do I always feel like I'm 84? I can't wrap my mind around the truth some days. I sometimes have bursts of energy where all I can do is finish a task I've been trying to complete for weeks, and that is now something that's exciting for me! 

It's so frustrating to watch others destroy their perfectly healthy bodies with drugs and alcohol. Why can't they see what they have and embrace it? Their health is something I wish I had and something that I took for granted the 24 years before being diagnosed. 

It's simply not fair and it literally makes me want to scream. Sometimes, I want to smack them across the face for their irresponsibility, surely I'm not alone in this. 

But what if we take what's 'not fair' in our lives and use it as an opportunity.

My MS sucks the life out of me some days, it literally hurts. But what if I can help others with MS or another chronic illness by being able to relate to this invisible disease? 

Perhaps, there's a reason for this diagnosis. Perhaps there's a purpose in this for my life.

I won't look back in 5 years and think hmmm what a waste of an opportunity that God gave me to serve as a witness in a struggling community. I won't waste the opportunity to build awareness of MS and what we suffer with. 

When you think about it like this, it doesn't seem so unfair right? 

When opportunity knocks, bust down the door and wrap your arms around it. There's a reason that we suffer, even if we can't see it at this moment. 

Let's take 2014 on with a smiling face not looking back and think of what we should have done or could have done with our opportunity.