I know, I know – awareness is power. I understand that what will help the NMO community and ultimately myself is creating awareness and educating others. Yet somehow, I just didn’t feel like sharing such personal information about myself. Let me take a step back…

My Dad worked extra shifts so I could take dance classes from the age of 6. Later, I was fortunate to attend a local high school that focused on the performing arts. Even though it had a diverse offering it was free to attend although one had to audition to get in as they had limited spots available. Many of the other kids came from comfortable households and had talent agents, commercial deals and private art lessons. My parents worked really hard, but I still grew up with modest means. Overall I had a great experience in high school but I was bullied for being poor, was smaller than the over developed (and very sexual) girls in my grade and lacked confidence.

I think there are a lot of things about me that are the same since high school but over the last 13 years I’ve made calculated steps to become who I’ve always wanted to be. When I walked into that room I don’t know why I was surprised that some people didn’t recognize me or with what I’ve done with my life, but I was. And ya, that brought a lot of insecurities up again.

If someone had asked about my health I might have told them about NMO but my disease is invisible from the outside so no one really knows the daily and constant pain I’m in. NMO has made me a stronger person because of what I’ve had to life through, what I face everyday and knowing what could happen at any moment. So I used that strength almost like my secret power against my insecurity. But to clear my conscious I need to apologize to all of you for not doing what all of you do so proudly.

For your endless effort and battle against NMO I am grateful.

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.

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.

I received a surprise call from Erin last night so I thought to update everyone on how she’s doing. It was a surprise because we haven’t spoken much. Ok – AT ALL. Erin and I used to speak several times a week and email almost daily but now that we have kids I’m happy to report that we’re just too busy.

Unfortunately, Erin’s had a rough go of her NMO (Neuromyelitis Optica) symptoms recently. She just returned home from her third round of PLEX and I could just hear in her voice the happiness to get out of the hospital and back to her beautiful son, Allen. Her MRI scans aren’t showing any new lesions so her doctors are having to rely on her word that she’s suffering in extreme pain. Although Erin receives regular Rituxan sessions, it just wasn’t enough to keep the symptoms at bay. Now her doctors wonder if she’ll need a daily dose of immune suppression like Cellcept or Imuran.

Besides the NMO, Erin has now become anemic and will require iron infusions via intravenous. This week will be quite trying as she’ll receive IV work for both her iron infusion and Rituxan.

Of course, we all understand how frustrating NMO can be. We get tired of telling others we aren’t feeling good and sometimes don’t even have the strength to say so. We get angry at our ever changing bodies. (Erin is fed up with the weight gain and inability to do anything about it. She’s tried juicing, Pilates and cardio workouts but when you’re in pain, you’re in pain.) So I was relieved to hear that Erin plans to speak to someone about her experience. She’s blessed to have a great support network. Her husband, Eric, is a God send and her extended family help her with her son, Allen. However, it’s just as important to work on our mental health so receiving perception from an outside party is not only ideal, it’s a necessity.

Mid May Erin plans to fly out and see Dr. Greenberg. She has a great team of doctors in the Denver area but like we all should be, Erin is an advocate for her own health so she’s chosen to receive an additional point of view and have Dr. Greenberg provide her with a check up.

Erin is providing almost daily updates on the Facebook groups and I know she’s grateful for all the support and kind words through her current challenges.

Erin’s son Allen is a toddler now who is full of energy and eager to melt your heart. Recently Erin planned his first birthday party with a guest list of over 60 people! Post pregnancy, Erin has struggled with her NMO symptoms and tried her first round of PLEX (aka plasma exchange) with some success. You might catch her on the various NMO support groups on Facebook.

With her win of MasterChef, Christine is (reluctantly) our new poster woman for NMO. After her win, she’s been touring all across the US to be on various talk shows and recently travelled to Vietnam to be on their production of MasterChef. Look for her cookbook to be released May 14th.

Buy her new cookbook here!

While I’m still enjoying my maternity leave with Sophie (in Canada we get 1 year), I have also returned to school online to complete my marketing degree, am focusing on my health by way of obsessing over working out and am in talks for a special project that I’m unable to speak about right now. As a new family we recently travelled to Mexico and Whistler, BC.

Since we are out exploring our great world (and we’ll continue sharing those experiences) we thought it might be great to put a call out to other NMO patients to join us. We’re looking for guest bloggers to share an experience on NMO Diaries. You can write a blog, do a video diary or be interviewed by us. So share your MS walk, running a marathon, recovering from an attack or any other experience that excites you. Email your interest to nmodiaries@gmail.com.

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:

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.

1. Getting needles.
2. Taking multiple pills at the same time.
3. Saying “I’m ok” and people actually believing me.
4. Trusting myself to know my body and what it needs.
5. Seeking help from my family, friends, doctors, coworkers, NMO family, etc.
6. Enjoying life (especially the small things) and taking chances.
7. Organizing my day so I get the most done with the least amount of energy.
8. Explaining what NMO is.
9. Being more patient with others.
10. Being grateful.

Happy New Year everyone!

I met Dora in a busy downtown restaurant over the lunch rush. The first thing I noticed about Dora is how absolutely stunning she is. Dora has impeccable style and the brightest smile. To those passing our table we simply looked like two friends meeting for a meal but instead we both suffer from an invisible disease.

Like other women our age, Dora focuses on moving forward in her life. She has a thriving career as a pharmacist and enjoys working with her diverse clients. She hopes to one day marry her long time boyfriend who works as an entrepreneur. And together they have been working with a surrogate to grow their family. But what makes Dora unique (and makes me feel less alone in this disease) is how she’s learnt to deal with NMO. Dora is visually impaired in one eye and has had multiple attacks over several years. Our conversation quickly turned into how we manage NMO. We both expressed how support from our families was monumental in our healing, our difficulties with the universal medical system, and of course, our mutual disgust for the weight gain that comes with the steroids.

What I took away from lunch was another friend, someone else who understands what it’s like but most importantly, Dora taught me the art of “it’s not really a big deal”. Like I mentioned, you’d never know looking at us that we have NMO but somehow Dora seems more put together. After lunch she had to run an errand before a 3pm work meeting on a Friday afternoon. That’s just life. That’s just another day. That’s not really a big deal.

But it is Dora because we have NMO.

It was a pleasure meeting you Dora. I look forward to us continuing our friendship.

Erin getting day 2 of 5 of IVSM today.

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