Colorado Ski Retreat

Every year we try to head out to Whistler, British Columbia because we love the mountains and the ski village mentality but this year we jumped at the chance to visit Erin and Eric in Frisco, Colorado at the same time that Christine and John, who flew in from Houston, Texas.  We were all a little surprised that our first reunion since meeting at the Guthy-Jackson Patient Day in November would happen so soon but Erin, Christine and I have become a close team of warriors battling our disease together.

This was the first time that Erin and I attempted to take up an old hobby since our diagnosis.  I was terrified of the pain and you'll see my first run was really like the first time again but truth be told, I was more scared of breaking a promise I made to myself a long time ago.  Christine took up skiing for the very first time - now that's courage!

I'm so blessed to have shared this experience with such an amazing support network.  You'll hear us laugh a lot (especially Erin) through our pain, our bad jokes about my butt pads, and John who was so hard core on the mountain he actually ripped the crotch right out of his board pants!

Note: Sorry about some of the bad video footage.  I'm still learning how to use my Flip Camera.

"Living With NMO"

Here's the newest video from the Guthy-Jackson Charitable Foundation on "Living With NMO".

I think cows are cute and cuddly

On my constant quest for self improvement here's my insight on a new initiative I'm taking on:

Samana, Dominican Republic

Sorry for my radio silence.  I love vacation because it gives me a time to get away from the norm, I challenge myself in a new environment and I get a chance to reflect on life.  I hate returning from vacation because within a few hours I'm feeling overwhelmed with the amount of work to be caught up and thus my radio silence.  

My husband had to travel for work so I took the opportunity to also get away.  My sister, Deb, and I have been trying to take a sister trip for several years so we finally made it happen to the beautiful Dominican Republic.  I also thought it was fitting to share this vacation with her because she was the one with me this time last year when I was officially diagnosed with Devic's.  She's my go to #2 person after my husband for support and although we had our moments during this trip (we are sisters after all), I'm thankful that we went.  

Although I'm very proud of what I've accomplished within the last year, it was also a little bittersweet.  I think it has taken this entire time for me to finally admit that I'm more than just angry, I'm actually pissed off.  Some might say I'm being tough or a true fighter but I know myself well and this thought process is dangerous for me.  It's hard to stay positive all the time.  I get sad sometimes.  I get frustrated.  No, this wasn't fair.  I do the best I can everyday and I know that attitude has really made a difference but it still feels good to admit that yes, NMO sucks.  

So below, please enjoy my 1 year anniversary celebratory vlog.  

Nesting: What's all the hype about anyways?

I never have enough time to see all of my friends, all of my family, all of me.  All of them matter yet I somehow always feel like I'm missing chunks of their lives.  Thank goodness for Facebook that allows you to constantly creep but if you're like my dear college friend D, she's too busy to be updating on the internet so I still miss out.

D (and her husband T) have a beautiful home.  I'm so very proud of them.  It took me 2 years before I got around to seeing their home but I'm glad I finally did.  D was always the one alongside me in college who stayed up all night till our projects were just perfect.  She's never lost that drive and her home shows that.  They just showed us the couch she sawed to fit down the stairs into their rec room.  Most people just buy a new couch.

I came home to our disaster and I'm completely motivated to take on all the projects I mean to but never get around to.  Problem is, am I the type?  I've always felt "nesting" was a chore, a show off tool, somewhat of a necessary evil.  When I put my mind to it, I'm rather good at it.  I feel nesting is important if you're going to raise a family.  D and T are working hard towards that and I have no doubt they will be amazing parents together.  Speculation has always been that I'd be a mother one day too.  The thought amuses me, excites me but also scares me shitless - and it made sense just exactly why today.  I ALSO dream about travel and tales of other worlds not just paint colours, napkin rings and diapers.  I married someone who is exactly the same way.  I know a lot of idealists think you can do both (or even all of it) but with NMO I know realistically I can't.  Between a career, constantly renovating/updating/managing a household, travelling and then wanting to be a parent - all whilst living with a disease, seems like pure insanity.

Suddenly prioritizing my social calendar seems like an easier task.

Almost Through The Holidays

I like a good challenge and I think it's important with this disease to always set goals/challenges and celebrate the small successes. However, I'm taking a moment to reflect and it occurs to me that often my goals involve pleasing others with little benefit to me.

Did I really need to host Christmas dinner? Why didn't I pawn that responsibility to my sister or my mother? Sure, I had fun, but really, it took a lot of energy - valuable energy I should conserve for survival now. I guess I'm still learning to say no. Funny though, my NMO sisters (that's what I'm calling C and E now) did the same thing and hosted parties too. And while I was drafting this blog, C actually wrote the same thing here: http://www.theblindcook.com/.

I found the holidays very testing this year for several reasons. Again, dealing with my alcohol consumption and constantly saying no at gatherings is very exhausting. Hosting dinner for my family seems like a fun idea but I spent an entire day preparing by myself and by the main event I was feeling drained and wishing everyone would go home. The Christmas tax, which is what I call the excessive spending that is required over the season, also keeps me up at night. I'm still recovering from the last year not making as much as I did before.

Throughout all this I start to panic a lot on the inside - all while putting on a brave face. I hate that I do rely on my support network to get through busy times like this. I feel a sense of insecurity and embarrassment that I need those close to me. It has become my reality and I am humbled by it. Dec. 30th was the 1 year anniversary that marked the loss of Michelle Lang, another Canadian journalist who was posted in Afghanistan. My husband has been there twice on a similar assignment so thinking of Michelle and the 4 soldiers who died alongside her rips at my soul. I barely made it through the holidays without him (he worked a lot) so the thought of him being gone that long on another assignment, to somewhere so dangerous, and maybe never coming home - it haunts me. I can't even take comfort that our troops have made an impact and I can't help but think that the exact civilians she was trying to reach out to aided in the attack on her convoy.

I feel like I live in constant terror - losing him, losing me, losing the family we have been working so hard to build together. Maybe my resolution should be to fight the fear.

Dear Alcohol, It's Not You...It's Me.

BNMO,or Before NeuroMyelitisOptica, I've been known to enjoy a drink or two or three. It was common knowledge that apple martinis are my kryptonite. I'm also a fan of a good glass of chardonnay or even a cran and vodka. At least in my experience, recruitment requires a certain level of networking ability - often attending a function and schmoozing with alcohol. Unfortunately, that trickled into my personal life and I spend my weekends with the movers and shakers and the martinis. What I'm saying is that in every social and professional setting, I'm now offered an alcoholic beverage.

And it was glorious.

I've always said that one of the biggest challenges with NMO is that it's hard to recognize how difficult every day is when you look great on the outside. Now that I'm slowly losing my steroid weight, everyone keeps telling me that they are glad to see I'm feeling better...except that I'm not so I just say thank you and move on. But now, looking better = feeling better to the outside world = push a drink on to me. So lately, I've given it a try but enjoying a good drink just isn't the same. With all the meds coursing through my veins, they just don't mix well with booze. It takes me days to recover and I'm up all night feeling ill. Yet, I'm also so very tired of explaining to people that booze doesn't work and that leads to explaining how I feel, which leads to sad faces and shock.

Last week I tried saying, "I quit drinking" every time I was offered something (and trust me, it was often especially during the holiday season). Then I had people question if I was pregnant.

Changing my bad habits or essentially, a lifestyle change, may be more difficult than I thought.