Niagara Falls 2013

Recently we spent quality family time at Niagara Falls (the Canadian side in Ontario). My Dad just turned 65 years old and it was also my Mom’s birthday so we thought to do something special.

Dad won’t admit it but he found turning 65 difficult. Although it has been years of failing health (he was a lifelong smoker who was finally able to quit last year), being labelled a “senior” forces one to really evaluate what one can do better.

Living with Neuromyelitis Optica (NMO) has forced me to make that evaluation sooner. I’ve read countless dietary books, blogs and medical articles and have tried various meal plans. I push myself that extra 5 minutes on the elliptical machine or just another 25 crunches. If I had a choice, I’d live in denial of the inevitable aging and go eat a juicy burger.

But I want more moments like this:

And this:

(That’s my Mom, Ellen, and my sister, Debra, with Sophie and I.)

The majestic beauty of the Falls reminds me to take a moment and appreciate that life is bigger than me and definitely bigger than this disease.

Meet Courtney Veston

Many of you are participating in MS Walks across North America.  We’re grateful that you’re getting the word out on Neuromyelitis Optica (NMO).  Courtney built an impressive team in her home town of St. Augustine, FL so we wanted to get her impression of the day.  

Tell us about yourself.

I am a Navy vet and I separated in January of 2006, moving from Hawaii back to my home town of St. Augustine, FL. A year later I married my Navy sweetheart.

In September of 2009 I started experiencing weird sunburn feeling in my legs and arms and it was very sore to the touch. I didn’t think much of it. My husband and I went to visit my in laws in Pennsylvania and I began experiencing very bad headaches, then on the drive back home I was unable to urinate. I went to the ER when I got home and received a catheter and due to the fact of the tingling and sunburn feeling, I was seen by the Neuro team. I was placed in ICU for about 4 days then eventually diagnosed with Transverse Myelitis. About a month went by and I was somewhat ok, only having headaches so went to my primary care physician and was given a pain killer. Few days later I was shopping for Christmas and next think I know I awoke to EMTs. I was rushed to the hospital as I passed out while in the store. The hospital kept me overnight and released me. Then a bit later I was very nauseous, throwing up and had unbearable headaches. I was so tired all the time. My husband took me back to ER where the hospital said I had meningitis. I stayed in that hospital for about 11 days and was released. Not too much longer after that my left eye started to act up, almost as if a curtain was being drawn over it and it began getting blurry gray and eventually went completely black. I had an appointment set up with Jacksonville Mayo Clinic but it was still months away. I called Mayo and the neurologist told me to get the ER ASAP! I brought all my hospital records, notes, MRI’s etc. After being reviewed by the Mayo ER I was admitted. Next day the team of Dr’s including the Neuro chief came in with their diagnosis of NMO. I was relieved yet scared at the same time. I still to this day do not carry the antibody for NMO.

I live as normal of a life as possible. I have been married almost 6 years, no kids yet (I’ll get advice from little Ms. Erin Miller) but hopefully that will happen soon. I work 40hrs a week at the most wonderful caring place as an Insurance Agent. I walk unattended which I am happy about, and spend lots of time with my nieces and nephews. I love my life even with the disease. I guess I believe everything happens for a reason…taking the bad and making the most out of it. I am a very positive happy person and most would not think I have anything wrong with me. I am thankful for all of those in my life.

What motivated you to do the MS Walk and build a team?

I wanted to do the local MS walk as it was my time to share with others about this disease. Most people have not heard of NMO so I wanted to spread the word. I think if I can help raise money for MS and a cure can be found, then that is one step closer for a cure for NMO!!

The NMO community was really impressed with the size of your team. How did you convince so many people to join you?

I was born and raised in my little town St. Augustine, FL as was my mother and family so we are very familiar with the community and businesses. Most of those who couldn’t walk donated, such as the businesses that sponsored my shirts. The walkers were made up of my friends, friends of friends, coworkers and my family. It was truly an amazing turnout and I couldn’t have been happier! I did have a fellow NMO walker/wheeler Mia Stout Byard that made the 2 hour drive up with her daughter and her friend to attend my walk even though there was a walk the same day in Gainesville where she was from.

Tell us the details of the walk.

The walk started at the First United Methodist church downtown. The weather ( for Florida) was dreadful…it had been such a rainy weekend but lucky for us it slacked up for the walk and it was just chilly. I didn’t mind as I’m on steroids so the cold is good for me. The shirts I designed online and had a friend of ours put it in the format to have them printed. We had a table and tent set up with Guthy Jackson brochures, I had rubber awareness bracelets made to hand out and my friend had awareness cozies made. The company that does our work shirts gave us a fabulous deal and I was able to purchase shirts for my entire team consisting of 63 people and them some!

You’ve inspired other patients to act as a Patient Advocate. What advice would you give anyone wanting to get more involved?

I became an advocate by chance. I really am not one that likes to be the center of attention at all but I do like any community involvement. I have a wonderful group of family and friends that would do anything for me and they came through as usual for this walk. I highly recommend anyone wanting to get involved to get a nice group together so they can help out. Before you know it, you become very overwhelmed!

Do you plan to make this a yearly event? If yes, what would you do differently?

I have spoken to my family and friends and they would like to try and get a NMO walk on our own. I know its hard work, but again I know so many folks we can make it happen. If not I would definitely have another team for next year.

What surprised you the most about the day?

I was surprised the most at the people that actually signed up and actually showed up. A lot of times you receive what you think will be a massive team then no one shows…so I was ecstatic for the turn out and felt like a celebrity. The North Florida MS chapter could not believe the size of the team. It Made me very proud.

Is there anything we missed that you want to share?

I just want everyone to know that just because you have this rare disease do not let it slow your life down. Take things as they come as I do. I live life as normal as I can and surround myself with wonderful people that make my life that much better. I have an awesome husband that through all of this has stuck by my side. I think to myself that I am lucky as things could be worse. Again take it day by day and keep that positive attitude. It’s amazing how much better you will feel. If folks ask about your awareness bracelet or about the disease don’t be afraid to share. I am very open about my disease and what I go through on a daily basis. A lot of people take steroids for a small cold and often I hear them say they have new found respect for what I go through. That makes me laugh.

Whistler 2013

We just returned from our trip to Whistler, BC and this year we made it a family event, bringing along my mother and brother in laws, one of my best friends and Mike’s aunt and uncle were able to meet us. And of course, my Sophie goes where we go. Many people were skeptical that I would be on my snowboard 6 months after giving birth so in true rebellious fashion I needed to prove them wrong. I like the satisfaction of saying, “I told you so”. Snowboarding is my representation of dusting myself off and getting back up – from NMO (Neuromyelitis Optica) and now having a baby.

I don’t know how it happened but somehow I’m a worse boarder than I was before. Why you ask? A couple of days every other year isn’t enough to get good at anything plus I still feel like an alien carrying these few extra pounds from child bearing. I pray that I’ll be good at the sport one day but the biggest barrier to my success is my ability to trust myself. As I stood at the top of each run I just couldn’t find my inner peace. I used to love the thrill of thrusting myself down the mountain yet this time I couldn’t find my excitement. I plugged my iPod in for motivational music and tried for inspiration from the snow covered trees and still nothing.

On my second day I spent the morning by myself cruising down each run, completing turns and only falling once. I still could not find my inner peace but I had a glimpse of it. I love being someone’s mom and someone’s wife but along the way I have been forgetting to be me. I don’t trust myself that I will find me again but I’ll keep forcing myself in situations like snowboarding till I do. Just like recovering from an NMO attack, maybe if I keep piecing together each of these fragments I’ll emerge a revised and improved version. I want to be the best me so I’m a good role model for my daughter.

Now that we’re home I’m planning to hit the hills again here in Ontario. They say practise makes perfect. Until then, I have prayer and laughter.

Here’s a sample of a song I use to stay motivated on the mountain:

First Family Vacation

Mexico is a very special place for me. It’s where I first travelled alone without my family.

It’s also where Mike and I were supposed to get married. We wanted a beautiful beach wedding at the El Dorado Seaside resort. 6 months before the wedding date we travelled to meet our planner and had a pre-honeymoon. Then a month later disaster struck. I was hit with my Transverse Myelitis attack and all hell broke loose. We called off the wedding until we figured things out.

Mexico is also where we went when I was horribly sick and we needed to retreat (we stayed at the El Dorado Royale). Overweight from the steroids and our spirits broken, we hashed things out. Coincidentally during that trip it poured rain for 6 of the first 7 days, almost as if the heavens above we’re also crying with us.

So it was more than fitting that our first family vacation be to Mexico where we could create new and happy memories. This time we stayed at the Azul Beach Resort (a sister property to the previous ones we’ve been to). Almost exactly 3 years from when we were supposed to be married, I sat in the beach cabana with our little angel Sophie. As I reflected on how many things Neuromyleitis Optica has taken from me, the one thing I’ll never lose is my ability to believe that everything happens for a reason.

Check out this video of our trip to Coba, one of the Mayan Ruins.

Happy Thanksgiving!

Hello NMO family.  Hope you all have a safe, happy and HEALTHY Thanksgiving Day.

Erin getting day 2 of 5 of IVSM today.

Christine preparing to deep fry her turkey, now a Thanksgiving tradition.

Erin and Allen en route to Patient Day

Sophie’s Smile

I thought to share this quick video of Sophie who is enjoying her morning play time.

Taking a bite out of the big apple (part 1)

Throughout her journey of becoming MasterChef USA 2012, Christine spent some time in New York City.  Despite her Neuromyelitis Optica (NMO), she found new ways to enjoy her travels.  Follow the link below to read her recent blog entry on The Blind Cook.

http://www.theblindcook.com/taking-a-bite-out-of-the-big-apple-part-1/

Congratulations to Christine (Top 4 Baby!)

Mi Vida Loca

Well, well, well. It’s been a while, dear readers. This third season of “MasterChef” is more than half over, and I’m proud to say I’m still in the game. As of last night, top 6, baby!

I’ve become the fan favorite of this season, and if you would’ve told me this while I was filming the show, I would’ve rolled my eyes and said, “Get outta here!” I don’t know why, but I found it hard to imagine my life becoming a topic of public interest. I guess when you’ve lived 30+ years of your life in obscure anonymity, fame is hard to fathom. But here it is, thanks to a little summer primetime competitive cooking show and Gordon Ramsay.

It’s weird to even say I get fan mail. But I appreciate all of it so much. It’s wonderful to know that I’ve inspired thousands of people all over the world; it makes all the stress I underwent while cooking my arse off on the show all worth it.

But the important question here is how is my health? And how have I managed to keep my NMO under control? That’s a mystery to me. With the level of stress and fatigue I’d endured at “MasterChef” and even the roller coaster I’ve been on since the show’s started airing, I’m quite surprised my NMO has remained quiet. I still make time to get to the lab and have the routine blood work done. And a few weeks ago, I made a trip up to Dallas to visit with my neurologist. Everything has been checking out a-okay, and I really need to thank my lucky stars that my health hasn’t been compromised after having undergone what was undoubtedly one of the most crazy experiences of my life.

Amidst the press and thesis, I should be going in for another routine round of Rituxan in the upcoming weeks. Even though my CD-19 count has been 0, my neuro and I decided I should go ahead and flush out my B-cells before life gets too crazy and chemo time becomes hard to schedule. Is it a bit ironic (masochistic?) that I’m sort of looking forward to the Rituxan appointments? Jennifer the nurse pushes liquid Benadryl straight into my veins, and I have an excuse to take a slumber from the writing, the press, the social networks, the phone calls, the emails, the requests…

It’s been a very positive experience for the most part. But all change—even good change—is stressful. And all of we NMOers seem to be innate stress-balls. Here’s to good health and good fortune. Oh, and excuses to take a respite.

Thanks, everyone, for watching “MasterChef” and supporting #teamchristine: Mondays and Tuesdays on FOX at 9/8 CT. Visit my Facebook fan page and hit the “like” button, and follow me on Twitter. Much love to the NMO community.