Coming Soon! True Champions video story

I recently had the pleasure, no wait…make that honor, of working with one of the fab crews over at HealthiNation, an online health video network. The team is producing a bunch of video feature stories, including some about MSers, as part of their “True Champions” series. The videos highlight folks advocating awareness of specific health conditions.

A producer, camera operator and sound tech hung out with us in sunny San Diego to shoot interviews, capture Team Luca riding and enjoying life in our neighborhood. Essentially, the whole point of the matter was to reflect that I am able to live a full life, one that is not defined by Multiple Sclerosis.

What an amazing experience! First, the crew was incredible and so very professional and mindful. My new pals were considerate of my energy, comfort and time as we created the material, frequently checking in with me to see if I needed water or just a break. And while I did wake up that morning battling fatigue, I informed the crew that I was okay because, as I shamelessly pointed out, “I’m on drugs. No, wait, as prescribed by my doctor. For fatigue, it’s nothing to worry about...I’m just a little amped up”. Yes, needless to say, I was pretty excited about participating in this project.

The day consisted of interviews and shots that highlighted my diagnosis, life with MS and My MS Manifesto. I tried to give Dr. Julie some serious cred here, as she is my inspiration, but found myself mispronouncing her last name. Nonetheless, we talked about the list of things I hope to do while living with MS, including laughing-laughing-laughing, jumping off the Stratosphere, riding my bicycle and working to lift up the MS community.

Now, I don’t want to give too much away because the video won’t be released until January but I will say it was a blast! At some point the camera operator was hanging out of the car window, armed with his camera, shooting Team Luca riding, yelling “Yeah! This is awesome!” So, stay tuned my friends.

Team Luca! Photo courtesy of HealthiNation

Oh, and the bonus? Even though I was battling fatigue all-day and endured some pain my leg, I got the chance to ride my bike. Yet another reminder that, when I ride, I am full of joy and bliss and forget that I am a person living with MS, if even for a few moments.

Best always,

Christie

My MS Manifesto...

A couple of weeks ago I did something I’ve always wanted to do: I finally jumped off the Stratosphere in Las Vegas. Yep, you read that right. I fell 855ft off the tallest observation tower in the world*.

Just moments before the big jump!

You might be wondering, “Why on earth would she do that?” “Well, why not?” is my first reaction to this question but it goes deeper than this. Now that I am in my 40s and live with Multiple Sclerosis, I want to be in charge of my life and this includes doing stuff that I’ve always wanted to do. Ultimately, it’s all about how I react to the diagnosis and trying really, really hard not to let MS give the orders.

I know, I know. I realize that jumping off a very, very tall building isn’t quite leading the charge of my MS life yet, for me, it is an act of knocking down the disease a bit. I try to do everything in my power to not let my diagnosis get in the way of doing the things I love and/or signing up for some pretty fun adventures.

 

In response to the words I heard from my neuro in 2010, “You have MS”, I created “My MS Manifesto”, my personal declaration to guide me through my life with MS. The idea comes from Dr. Julie Stachowiak, PhD and her book, “Multiple Sclerosis Manifesto: action to take, principles to live by”. I became wildly inspired after reading this and I created my own manifesto, things I want to do to get through this.

My MS Manifesto is a mixture of adventures, actions and hope. It’s a work in progress, constantly evolving because I don’t always know where life will lead. My journey with Multiple Sclerosis is not something I signed up for but now that I’m on this road, I want to, as Dr. Julie writes, “…make the hard parts easier and the good parts last longer.” This is how I will get through my life with Multiple Sclerosis.

I will…

• Laugh, laugh, laugh! It really is the best medicine
• Listen to my body. It often tells me when to rest so I should nap as often as needed
• Ride my bicycle. In fact, now that I’ve done 15 miles and 30 miles in the annual Bike MS Bay to Bay event, I want to put more miles on my bike. I will try 100 miles for Team Luca’s 3^rd annual ride
• Ask for help when I need it. This is difficult because I want to be independent yet sometimes having someone pitch in makes all the difference in the world
• Jump off the Stratosphere in Las Vegas!
• Move my body. No matter how moderately. Exercise is an important element in being well with MS
• Trek to Mt. Everest base camp. The only thing to decide? Climb the north side or the south side?
• Regularly visit my hilarious and extremely well trained neurologist
• Stay informed about the latest treatments. I will do this by doing copious amounts of research and asking a lot of questions. Right now I am very intimate with Tysabri (DMD) and Gabapentin for nerve pain. Essentially, I want to take the reins in making health decisions.
• Help lift up our MS community by continuing to share stories and supporting my peeps, whether they are newly diagnosed or have been living with MS for a while. This is important to me because I do not want anyone living with this serious disease to feel alone. We’re all in this together.
• Keep a symptom journal. I’ll do this by jotting down my symptoms in my document “Weird sensations that are bugging me right now”. While I believe keeping track of my symptoms is critical, I am notorious for “getting to it later.”

How about you? Do you have a manifesto? If not, don’t delay ‘cause you never know what tomorrow brings. Think about what you want to do and should do to get through life with MS and begin your manifesto. And, have you read Dr. Julie’s book yet? If not, I urge you to do so, like today!

Take care,

Christie

*I haven't fact checked this stat but it certainly seemed like the tallest observation tower in the world!