She’s Here!!

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Congratulations to the O’Brien Miller family who welcomed Alana Joyce Miller into the world on March 9th, 2015. She weighed 6 lbs. 8 oz. and  is 19 inches long.

 

 

 

 

 

 

 

 

 

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Mum and baby are doing well.

 

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Big brother Alan is thrilled with his new little sister! He’s been busy teaching her about monster trucks and helping out at bath time.

Congratulations Erin, Eric & Allen!

30
Mar 2015
POSTED BY Lelainia Lloyd
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Snowboarding without Sight

This should be the last you hear about snowboarding for the season.

Following up on my January post about adaptive skiing and snowboarding and Jenna’s post last week about her family trip to Whistler, I’m posting my most recent Blind Life YouTube episode called How the Blind Snowboard. My husband, John, took footage from our Colorado trip and put together this episode highlighting our winter adventures from snowmobiling to snowboarding. NMO has taught me the true meaning of carpe diem, and I’ve become much more adventurous and brave since my diagnosis years ago. I figure, if I can survive NMO, I can do anything. This video is proof that you can still enjoy life in spite of Neuromyelitis Optica/NMO and vision loss. Happy watching!

23
Mar 2015
POSTED BY Christine
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Video

Snowboarding with NMO

A couple weeks ago my family took our annual trip to Whistler, British Columbia. Even though my husband was the one to fall in love with the city before me, I’ve come to really look forward to the fresh air and now, even the snowboarding. Let me take a few steps back…

When I first took up snowboarding it was on a whim, or rather a misinterpretation from my therapist. I was in my mid 20s, divorced, I moved to a whole new city leaving my friends and family and even declined a promotion to chase something I couldn’t quite explain to myself. I knew I needed help figuring out what I was going through so I found a therapist I really liked and we used talk therapy vs. medication. She recommended that I find something to commit to and stick with it. My husband (boyfriend at the time) wanted me to try snowboarding so on a whim I marched into a sports store, spent a ridiculous amount of money on all the gear and headed for the bunny hill thinking snowboarding would be the thing I could commit to. I like the outdoors, I’ve always been somewhat athletic and I’m a bit of a thrill seeker. What a mistake that was! Despite the beat up tailbone and bruises to my body and ego, I kept going. Then NMO happened.

When they tell you that you’ll likely never walk again or at least really struggle you either accept it or you make the decision to prove them wrong. I made the decision to walk in high heels again and still keep trying to snowboard no matter what. Even though I’d still qualify myself as a beginner because I just don’t have enough time to really practice, I’m still committed. Here I am, still toughing it out on the mountains.

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I’m scared of heights and it hurts like hell. I mean, it really hurts, but this matters to me. Truth be told after the first minute my spine feels like it’s being ripped out from my neck and the pain gets worse throughout the day. And my legs, those useless pieces of garbage…ugh. So I get nervous and pep talk myself on gondolas, chair lifts and when I’m strapping on my board. I’m sure I seem crazy to everyone around me and I usually don’t disagree. But the ability to face my fears – of heights, of commitment, and of one day never walking again – when I get to the bottom of that mountain, that’s euphoria.

They say with snowboarding that one day it just clicks. I felt like this year it kinda did for me and right from the get go I was able to put together turns and do my dreaded toe turns without panicking and choosing to bail out. I’m wondering if with life that one day it just clicks for me too.

Here’s a sample of my scared rambling (you’ve been warned) just before I head down a new run. And another video showcasing my (lack of) talent.

http://youtu.be/pnLBWV6rFF8

18
Mar 2015
POSTED BY Jenna
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LA NMO Patient Day 2015

Arriving in LA, March 3rd, 2015.

Arriving in LA, March 3rd, 2015.

So I’ve just returned from my first NMO Patient Day in Los Angeles. I am still processing the experience- I think it will take a few weeks for everything to sink in. I was mulling over which parts I wanted to share with you because obviously, there’s alot that goes on at an event like this. I think I will go with the things that stuck out for me.

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GJF founder Victoria Jackson welcoming everyone to NMO Patient Day.

First of all, the Guthy-Jackson Charitable Foundation was only founded six and a half years ago. At that time, there were NO clinical trials for NMO. There are now THREE being set in motion which is absolutely incredible! At Patient Day, we had the opportunity to hear from representatives from each of the three drug companies, Alexion, Chugai and MedImmune that are running the clinical trials. They did a great job explaining in layman’s terms how each of their trials worked. It was good to hear the facts and to be able to ask questions. Because NMO is so rare, we are being encouraged to participate in the clinical trials if we meet the eligibility criteria. This is our opportunity to actively help find the cure for NMO.  More information about these studies can be found here at NMOtion: http://nmotion.guthyjacksonfoundation.org/

The second thing that I noticed at Patient Day was the sense of community. It was heartwarming to see everyone looking out for everyone else in our time together. As a first time participant travelling solo to LA, I especially appreciated how everyone was welcoming and inclusive. The GJF staff were especially kind. The day after the conference, some participants had their flights cancelled due to inclement weather at their home destinations. I saw a post on the Facebook group saying that someone who was staying an extra day had a spare bed in her room if anyone was stranded and needed accommodation for the night. It’s that kind of generousity of spirit which really impressed me.

 

I had the chance to share some of the ways in which I advocate for NMO awareness through the UBC Interprofessional Health Mentors Program and as a Community Representative for the MS Society of Canada. While I wasn’t at my best, (I sustained a fractured rib the week before and was still in a considerable amount of pain) it was really nice to have people come up to me afterwards and offer such positive feedback about the work I am doing. I really appreciated the support. I always feel so blessed to be able to serve and do the work I am most passionate about.

Manhattan Beach, LA

Manhattan Beach, LA

I also had the opportunity the day before and the day after to do a little sightseeing. On Tuesday I took a shuttle bus to Manhattan Beach, which was beautiful. White sands as far as the eye can see. Apparently when Waikiki, Hawaii was establishing itself as a tourist destination in the 1920’s and 30’s, they actually-get this-imported the white sands from Manhattan Beach to transform their rocky beaches! I had a great time wandering the little seaside village and just because I could, I had ice cream for lunch.

Selfie on the Hollywood Walk of Fame.

Selfie on the Hollywood Walk of Fame.

Thursday, I took the hotel shuttle to the airport and caught a shuttle bus to Hollywood to see the Walk of Fame. I had a good time wandering Hollywood Blvd. and seeing so many familiar names. I talked to all kinds of interesting people and even found a penny press machine. My son and I collect pressed pennies, so I was pleased to be able to add three more from this trip. I ended my day in Hollywood at my home away from home, Starbucks at Hollywood and Vine. I don’t usually do the touristy thing, but it was fun to visit somewhere I have seen on TV and in the movies for years.

Jenna & I being photo bombed by her makeup artist at the Makeover Party.

Jenna & I being photo bombed by her makeup artist at the Makeover Party.

I feel really fortunate to have been able to attend LA NMO Patient Day. It was an amazing experience and one I hope to be able to do again next year. I am also grateful for the new friends I made and the old friends I caught up with. Those connections are so incredibly important and I really believe together we are so much stronger. Thank you to Victoria Jackson, Bill Guthy and the GJF Foundation for hosting NMO Patient Day and for everything you do to fight for those living with NMO. Thank you for being all in.

09
Mar 2015
POSTED BY Lelainia Lloyd
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Countdown to baby girl Miller

I am currently 38 weeks pregnant and the countdown has begun. I have been very lucky with my NMO with this pregnancy I have not had any problems with my NMO. It went into remission as soon as I got pregnant. Its amazing how your body can change so quickly from having horrible every day symptoms to your body acting like you never been diagnosed with the disease. It is a bitter sweet feeling telling myself “Oh this is what my body use to feel like.” It also makes me want to feel like this forever not having all that nerve pain and taking a ton pf pills everyday. Oh can’t forget doing Chemotherapy every 6 months that was nice vacation from that as well.

 

I am trying to enjoy my last few weeks being pregnant but as every woman who has been down this road knows. It is very exhausting and very uncomfortable at this point. Not to mention chasing after Allen every day and trying to get him to understand his baby sister is coming soon. I remember being pregnant with Allen was a piece of cake I could nap any time I wanted and just hang. Nope not this time Allen is making sure I stay busy! Eric has been a trooper the last few weeks, as he knows I just can’t keep up with everything.

 

I mostly have her nursery done there is just a few things I need to hang on the wall. My bag and her bag are packed for the hospital the car seat is ready to go. I have been staying home and just spending time with Allen, which has been nice. Since I know at any moment she can decide to come into this world. Plus I am terrified of my water breaking in public. Since that did happen when I was pregnant with Allen in the parking lot of Babiesrus, thank goodness it was outside cause that would have left a mess.

 

My doctor appointment yesterday went well she is doing well and everything is normal. I am having contractions but nothing constant. I have noticed they are stronger since this is my second time. I am still going to try to breast feed for 6 months instead of doing Rituxan right after labor. So I am crossing my fingers it will all work out. Of coarse all of my doctors will be watching me very closely making sure I will be ok. Stay tuned to see when she will make her entrance into this world.

04
Mar 2015
POSTED BY Erin
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A Remembrance of NMO Patient Days Past

Whenever it’s time for the annual NMO Patient Day sponsored by the Guthy Jackson Charitable Foundation, I like to reflect on Patient Days past. We’re always told in yoga class to be present, be in the moment, but sometimes a little reflection is good. It helps you see how much has been accomplished since, and it motivates you to keep moving forward.

I first met Erin and Jenna at the 2010 NMO Patient Day, and then NMO Diaries was born. The three of us gravitated towards each other because we were all around the same age and had come to NMO Patient Day with our husbands, and we knew each of them needed to share some caregiver bro humor at the end of a long day of NMO speak.

The six of us went to dinner at a nearby Italian restaurant, and my husband, John, ever the tech geek, joked that we should start a blog about the struggles of NMO. We kicked around some blog names, but even through the laughter, we knew we were on to something.

Now, more than four years later, we’ve welcomed Lelainia into the family, whom I haven’t had the fortune to meet in person. Lelainia and Jenna will be representing NMO Diaries at the 2015 NMO Patient Day next week on Wednesday, March 4th. I will sadly have just missed them by a day, as I’ll be in L.A. For work but leaving for another event in Michigan on the 3rd. And pregnant Erin will remain in Denver to get ready for Baby Miller.

The NMO family has grown vastly, thanks to the tireless work of the GJCF in bringing us all together. I have no doubt this year’s Patient Day will be filled with more relevant panel discussions and interesting seminars. And, of course, Patient Day will continue to instill a sense of belonging in all its attendees, fostering a community comprised of those who once were marginalized by this formerly orphaned disease.

I strongly encourage everyone living with NMO or affected by NMO to attend the NMO Patient Day, if not this year, then the next. In the meantime, you can watch/listen to my talk at the 2013 NMO Patient Day to get an idea of what this day is all about.

25
Feb 2015
POSTED BY Christine
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Happy Birthday Allen

Happy 3rd Birthday Allen! I can’t believe three years have gone by already. I feel so blessed that I am his mother. Every year around his birthday I can’t help myself to reflect on the journey Eric and I went on to have him. I remember when I was first diagnosed I just cried cause we didn’t know for sure if I could have kids and if I would pass NMO on to them. After seeing some pretty incredible doctors they assured me I could get pregnant and there was a very small chance I could pass NMO onto my children. I am just so happy and blessed Allen is a healthy boy!

 

Allen is quite the character and really building up his personality. I have really seen him grow up this last year. I love how much he can talk now and the stuff he comes up with can always make Eric and I get a good laugh. He is 100% boy; He loves his cars, tractors and trains. His favorite thing to do is tell me he is a racecar and makes racing noises as he runs through the house. Allen is almost 100% potty trained we have been working with him for a month now and he is getting pretty darn good at it. Allen also got a new room and bunk beds this last month. He was pretty excited since I decorated his room in cars for him. He now calls his old room the baby’s room. Allen kind of knows there is a baby coming soon. If you ask him where the baby is he points to my tummy. I know he will be a great big Brother!

 

Can patients living with an illness find love?

It’s Valentine’s Day this week, that overly commercialized “holiday” where we acknowledge our loved one with chocolate, gifts and heart felt (usually by someone else) cards. Love it or hate it, one might find the day difficult to ignore.

On occasion I scan the posts on the support sites and Facebook groups and every once in awhile I’ll see the gut-wrenching, heart-sinking comment from someone young who wonders if they’ll ever find love despite Neuromyelitis Optica (NMO).

I’m here to say YES! YES YOU CAN!!

I’m blessed, in fact all of us on this blog are, to have someone to share our lives with. That’s the good, the bad and yes, the ugly NMO.

Look, Valentine’s Day can make even the most beautiful, healthy, young man or woman feel self-conscious when they face the day alone and single – so don’t sweat it. The tough reality about NMO is that everything is, well, in fact tougher.
Be it cooking, walking, sleeping and even love and romance, we face hardships most will never understand. In truth, there isn’t really a good moment to tell someone you’re dating about the realities of an auto-immune disease. It’s not exactly first date conversation material…or second date…or third…The good news? Dating is tough for everyone and each person brings what some might refer to as “baggage”. I like to refer to it as being human, vulnerable and real. I like that no one is perfect.

I always wonder what it is about disease that makes people feel lesser than others. Are NMO patients of a lesser value human being than anyone else? We certainly contribute the same (and often more!) to society through our work, families and empathy to others.

So go ahead and put yourself out there. And if you choose not to do so because you’re happier alone and not because NMO stopped you.

(In full disclaimer I personally have come to adore Valentine’s Day because of discount chocolates the day after and my hopeless idealistic view of the world.)

Adventures in Toronto With Jenna

The CN Tower, Toronto

The CN Tower, Toronto

So two weeks ago, I flew to Toronto, Ontario to meet with the Canadian MS Society. I will be speaking about that meeting at GJF’s NMO Patient Day in LA, so I’ll save that story for later. Anyway, while I was there, I had the opportunity to meet and hang out with Jenna after all my work was done. Jenna very kindly took time out of her busy life to be my tour guide.

Tuesday night, after my day-long meeting was finished, Jenna picked me up at my hotel and we went for dinner at Rock Lobster. It was poutine week in Toronto and I had confessed to having never tried poutine. (I know, BAD Canadian!) For those who are unfamiliar with Canadian cuisine, poutine is a French Canadian concoction that consists of French fries covered in gravy and cheese curds. While this dish originated in Quebec, it’s served Canada-wide and there are hundreds of variations. Rock Lobster serves lobster poutine, which is made from hand cut Yukon fries, cheese curds, Nova Scotia lobster, lobster bisque gravy and chives. It was served up in a cast iron skillet. We also shared a three cheese hot lobster dip that was out of this world. The kettle chips they served with it were delicious. I am now on the hunt for something called Old Bay Seasoning so I can make my own kettle chips at home. I think Old Bay Seasoning actually an American thing. I’ve never seen it in stores here on the west coast.

The funky little coffee shop.

The funky little coffee shop.

Wednesday morning, Janna picked me up again and we headed to this funky little neighbourhood to grab tea and pastries for breakfast. Jenna said in the summer time, the street is closed off to traffic and people set up booths, creating an open air market.

Jenna & I having breakfast.

Jenna & I having breakfast.

The inside of the cafe was really interesting. At one end they had an old school candy counter and there were tons of old globes hanging from the ceiling. The cafe area was pretty small, so while we sat and had our breakfast, we couldn’t help but overhear the conversations around us. The locals were pretty entertaining-I kept catching snippets like “…she was only wearing a g-string and a fur coat.” or “Here comes the Russian Mafia!” and a whole debate about the length of one guy’s pants that ended with “I am dressed for fashion week man!” It’s a good thing I had my back to them because they were cracking me up.

Graffiti Alley, Toronto

Graffiti Alley, Toronto

Once we were fed, we jumped back into the car and Jenna drove me to the graffiti alley where Canadian icon Rick Mercer does his infamous rants. This was the one thing I was dying to see. (I adore Rick Mercer!) The alleys did not disappoint-they went on forever and I wish I could have stayed longer, but it was -13C and my hands were getting painfully cold from having to take my gloves off to work my iPhone to get photos. We did however very quickly film my own rant as a joke. Jenna did a great job with my Flip camera and we managed to do it in one take.

A bike around the corner from Tratorilla Nervosa & a shoe gazing selfie inside the restaurant.

A bike around the corner from Tratorilla Nervosa & a shoe gazing selfie inside the restaurant.

We toured around the entire city, stopping at landmarks so I could hop out of the car, snap a few quick photos and then jump back into the car to warm up. Eventually, we had authentic Italian pizza for lunch at Tratorilla Nervosa and a good heart to heart. It’s so great to spend time with a new friend who instantly feels like an old friend and who gets the whole NMO thing.

After lunch, Jenna dropped me off at the subway station so I could make my way back to the airport. My flight home was an adventure-I got a touch of food poisoning, we had MAJOR turbulence (which normally doesn‘t bother me, but since I wasn’t feeling well, didn’t make it much fun) and a screaming baby. (WHY is there always a screaming baby?!?) I was sad to have to say goodbye to Jenna, but we’re both going to NMO Patient Day in LA in just over a month’s time. I’m looking forward to hanging out with my NMO Diaries sister again and meeting everyone from the NMO community. See you soon!

02
Feb 2015
POSTED BY Lelainia Lloyd
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Ski/Snowboard Season 2014-15

If you follow me on Facebook, Twitter, or Instagram, you would’ve known I was in Breckenridge, Colorado, this past weekend to work on my snowboarding skills. And yes, the blind can snowboard.

I didn’t get a chance to visit Erin in Denver, but I knew we’d be rushing in and out of town, and Erin had been going through her own challenges with pregnancy #2 so I didn’t want her to exert herself too much.

My husband, John, picked up snowboarding after he went on his first trip for his bachelor party five years ago. He was subsequently bitten by the boarding bug, and I’d since gifted him a nice board, and he goes at least once a season. Because I don’t believe in limiting myself with my disabilities, I decided to try my own hand (feet?) at snowboarding, if only to have a common enjoyable pastime with the hubs.

My friends had told me they’d seen vision impaired skiers and boarders on the slopes, so after a little online research, I found the Breckenridge Outdoor Education Center, a wonderful facility providing highly trained guides and instructors in all forms of outdoor recreation from rafting to—you got it—skiing/snowboarding. When I first called the BOEC during the 2010-11 season, they had suggested I try skiing with the reason being skiing is often easier to learn than snowboarding. Skiing, however, turned out to be disastrous for me (I blogged about my skiing experience with the BOEC), and I figured out later the reason I’d gotten so much motion sickness was because on skis, you’re elevated so much higher off the ground; I could not feel the earth beneath my feet and thus felt disoriented like I was hurling through space with no idea of where was up and which way was down. With snowboarding, your feet are closer to the snow, and so I felt much more grounded and thereby less nauseous.

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This past weekend was my third time snowboarding in four seasons (I had to skip last season due to scheduling conflicts), and I’m happy to say I did not regress in skill. I am able to board down the easy green run at Breckenridge’s Peak 9 (I think it’s the Silverthorne run, for those of you who are familiar with Breck) with one- to two-handed assistance and verbal cues (as pictured above—I’m on the right and Jodi, my guide instructor is on the left). They say next time, I’ll be ready to advance up to the blues and work on completely independent boarding—woohoo! That’s my goal: to board independently down greens and easy blues with verbal cues within two more seasons.

While so many people applaud my courage (and yes, I admit it takes a certain amount of guts to strap yourself on to a board atop a snowy mountain without vision), I must attribute a majority of my success to the folks at the BOEC. They are trained to assist people of all abilities (I.e. Those with Neuromyelitis Optica/NMO, Multiple Sclerosis/MS, vision loss, paraplegia, quadriplegia, etc.) so that all may enjoy outdoor sports and beautiful Colorado. And if you’re headed to other ski destinations outside of Breckenridge, be sure to look into their respective outdoor education centers. There’s nothing like that feeling of accomplishment to boost your self-esteem and confidence. If I can do it, you can too. Stay warm, be safe, play hard.

27
Jan 2015
POSTED BY Christine
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