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! 

Why I Ride

I ride because when I propel myself down the bike path I am full of joy and bliss and forget that I am a person living with Multiple Sclerosis, if even for a few moments. 
(click here to read more about my story on multiple sclerosis.net)

Team Luca prevails, orange tutus and all

Team Luca makes the news in the fight against MS

We did it! 6 riders, 6 sock monkeys, 5 orange tutus (one of our cyclists was shy), several wrong turns, one TV interview, one minor fall and we did it! Team Luca finished the MS Bike Bay to Bay Tour and raised over $3,600! Not too shabby for a team of six.

Check out the video below to see a great recap by Dominic Garcia, reporter for cbs8, of this ever so important event. You just might see someone you know! Just look for the orange tutus.  

San Diego, California News Station - KFMB Channel 8 - cbs8.com

Team Luca was thrilled to be part of such an effort and we wear our medals proudly. But, it doesn't stop here. We all must continue to raise awareness, money and support in our fight against MS.

For the full story on cbs8, click here.

P.S. stay tuned for additional updates from Team Luca. Rumor has it one of their teammates is jumping off the Stratosphere in Las Vegas! Weeeeee!

Flo Fox, one of my MS heroes

Have you seen this short documentary yet? It's awesome. Living with Multiple Sclerosis since age 30, Flo Fox never let it stop her from doing what she loves most: taking photographs. Please take a moment to watch the clip, you'll be glad you did. And Flo? Thanks for being such an incredible hero for me. Hugs!

http://nyti.ms/1eFAB58

Stop smoking and get some Vitamin D, a theme from ECTRIMS

The sun vitamin has an impact
on the course of our MS
(c) cgermans photography, 2013

One of the three themes discussed during this year’s ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) was the “Environmental Triggers” of Multiple Sclerosis. Not surprising, more studies reveal that Vitamin D has an impact on disease course and smoking is really bad for our health, more so for our MS health.

Geez. This makes me wonder, “Good Grief!  Did I get MS because I was addicted to cigarettes for ten years?” Good thing I quite my habit of a pack a day of Marlboro Lights. And, while I am not necessarily getting more sun, I did start taking a daily dose of Vitamin D supplements. Hopefully this gets me on track to lessen the impact of my MS.

So, have a watch of this video, which features three prominent doctors in neurology. Dr. Lublin, Dr. Fox and Dr Wilner discuss the top advances in MS and the most interesting ECTRIMS presentations. You'll have to sign up on Medscape.com to watch the flick but it’s a good update on the chatter of this year’s event. 

Click here to watch the video: Top Advances in MS highlighted from ECTRMIS 2013.

Best always,

Christie

Sources:

Ascherio A, Munger K, White R, et al. Vitamin D as a predictor of multiple sclerosis activity and progression. Program and abstracts of the 29th Congress of the European Committee for Treatment and Research in Multiple Sclerosis; October 2-5, 2013; Copenhagen, Denmark. Abstract 96.

Hedström AK, Hillert J, Olsson T, Alfredsson L. Smoking and multiple sclerosis susceptibility. Program and abstracts of the 29th Congress of the European Committee for Treatment and Research in Multiple Sclerosis; October 2-5, 2013; Copenhagen, Denmark. Abstract 118.

Judy and Sophie's Story

From time to time we come across amazing stories and this one is no exception. Watch this video which captures the story of Judy, who lives with MS, and Sophie, a six pound capuchin monkey who helps her. I love what her husband says part way through the video, when he and Judy read on the web, "If you'd like a monkey, send us an email." Helping Hands? Keep up the great work!

Do you live a double life?

It’s hard living with a diagnosis of Multiple Sclerosis and even harder deciphering when to “come out” - who to tell, how and when. For me, telling my loved ones is easy and I’m very fortunate as I’ve read stories about how many MSers struggle with this, not getting the right level of emotional and physical support from friends and family. I feel lucky.

At work, however, I do not talk about my life with MS. So I’ve chosen to live a double life. By day, I work in an office (think Dilbert) amongst colleagues who do not know about my health status. By night, I live with MS amongst those who love and support me. 

It is exhausting being a secret agent. Hiding out in empty cubicles to make phone calls to my neurologist and discreetly leaving early for infusion, MRI and doctor appointments can be super difficult to cover up but I have chosen to hide my mission: do not reveal the MS diagnosis at work.

Read more about how challenging it can be to ensure my cover isn’t blown on Multiple Sclerosis.net. How has coming out with your diagnosis been with your friends and family? Work? Or, do you live a double life like I do?

Best always

Agent C.