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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Erin’s pregnancy update

I wanted to give everyone an update on how my pregnancy is going. The last 3 months have been challenging I have been really sick with a bad sinus infection, ear infection and bronchitis. I have been seeing up to 3 doctors a week trying to get me better but between being pregnant and having NMO I just can’t win. I am now on my fifth round of antibiotics and three different inhalers I am hoping this will do the trick. Eric has even been blessed with me not having a voice for over a week now. Other then that baby girl Miller is doing well she is over three pounds and is always moving around in my tummy. I am currently 32 weeks which is almost 7 ½ months and I have been really blessed and I have not been having any issues with my NMO I am still getting my CD 19 count checked every month by my neurologist. I got the green light this month to try to breast feed this time as long as a do some pulse steroids, I am very excited about this since with Allen I could not since I did Rituxan three hours after having him. I am hoping this time with breastfeeding I will not flare at all after having her.

These last 2 months are going to busy around here we will be moving Allen out of his room and into what use to be our office. He is joining the big kids club and getting bunk beds, He wants his room to be decorated in cars and planes. I am trying to complete this project in the next few weeks so he can get adjusted to being in a new room. I also need to start decorating Allen’s old room for baby girl and getting everything ready for her. This last weekend we went through our storage unit and pulled out all the baby stuff and the bassinett. I am defiantly in nesting mode and trying to get everything ready cause I know she will be here before I know it. I am trying not to drive Eric crazy with all the things that need to get done cause I feel like we are under the gun and I just want to have as much done as possible before she is born. As we all know your life is pretty hectic after having a baby not to mention having a three old adjust to having a baby sister now.

Disney World at Christmas

There’s something about seeing the castle that made me giddy, a reaction I wasn’t expecting. We never went to Disney World growing up – it just wasn’t something we could afford so I really had no expectation and no real understanding of what I missed as a child. When Sophie was still in the womb I used to talk about all the things I’d want her to experience. Disney was one of them. This year our work schedules aligned and we were able to get away at Christmas, something neither of us had done before. Sure, our family was a little peeved that we went away but for one year it was totally worth it.

Christmas at Disney is, well, magical. Even with 80,000 people it’s a special place. We had planned to take Sophie when she was older and I definitely still will do that but at 2.5 yrs old, she was overcome with joy. With reactions like this:

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And this:

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It was the best Christmas of my life. Seeing her reaction to her heroes, the castle, the parades and the rides will hold memories for a lifetime and then some.

Navigating through a large crowd, standing in long lines and walking all day does take its toll especially for someone with NMO (Neuromyelitis Optica). We stayed at a property close by and rented a car. We started early, took a break mid afternoon for a nap back at the condo then headed back for dinner and the evening parade or shows. On one of the days I asked for a Disability Access Card, which provides a return time on an attraction instead of waiting in lines. I found that extremely helpful because after our first day I secretly struggled with excruciating back pain where my lesions caused a flare up and swelling. If you ever have an opportunity to visit Disney but especially at Christmas, I highly recommend it. Here’s a few more pictures of our trip.

 

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CIRCLES Study, Canada

circles

So after the sorting out of a considerable amount of red tape, Canadians are finally able to participate in the NMO CIRCLES* Study in Canada!

Just before Christmas, I went out to UBC to meet with Katrina, who is the study supervisor so I could enrol. She arrived at our appointment with a binder that was about 3 inches thick, but she was quick to reassure me that there were huge sections of the paperwork we’d be able to skip over because a good portion of the information needed would be mined directly from my medical records. (I don’t envy the person who has to spend 2 weeks chasing down all those details!)

vials

Katrina asked me a ton of questions about my medical and geographical history. Some of the questions were really interesting and some of them were just plain weird-one reminded me of those dreaded math word problems I hated as a kid. (Katrina assured me that they are removing that particular question from future versions of the study.) Once all the information was gathered, she walked me over to the lab where they drew 9 vials of blood. This is about 4 tablespoons or 58.5 ml, which less than you would donate to a typical blood drive and it didn’t hurt at all. (My lab tech was excellent!) From there, the blood they collected would be broken down into 40 individual containers. All blood samples are labelled with a unique code-identifying information like my name or personal health number are not included. The blood samples are shipped immediately to the biorepository lab in the eastern United States were they remain until researchers working with the Guthy-Jackson Foundation apply for samples to work with.

blood draw

All in all, it took about 3 ½ hours for the entire process. Follow up appointments for the study will be shorter, as there should be less paperwork. While I was having my blood drawn, I learned that I am the first Canadian to have blood drawn for the CIRCLES Study in Canada! Cool!

I signed up for this study because this disease can leave us feeling pretty powerless. I think that one way we can counteract that feeling is by helping to further research, through our blood and medical information. It requires a bit of a time commitment, but I am making a conscious choice to take time out to help researchers learn more about NMO so they can search for a cure in the hope that someday none of us will have to endure losing our vision or mobility or to be fighting for our lives.

Currently, UBC is the only site in Canada enrolling NMO patients for the CIRCLES Study. If you are interested in participating in this study or would like more information, you can get in touch with Katrina McMullen at katrina.mcmullen@ubc.ca or call 778-320-5038.

 

*The Collaborative International Research in Clinical and Longitudinal Experience for Neuromyelitis Optica (NMO) Studies

05
Jan 2015
POSTED BY Lelainia Lloyd
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NMO

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Holiday Haze

Hmm…it seems I keep lucking out with the holiday posts.

Erin’s already posted about holiday baking. Lelainia already wrote a good post on how to stay healthy during the holidays. Sadly, these are the two main topics on my mind this week, as we’re hosting Christmas lunch for the family, and I just came down with a vicious cold.

Being sick sucks, but I’m the kind of person that always seeks the silver lining. And the silver lining of being unwell, in my opinion, is it’s a rare opportunity to put ME first. As a woman, and perhaps as an Asian-American, too, I’m constantly trying to make others happy. I work hard, often at the expense of my own health and happiness. It has been especially challenging since my success from MasterChef (everything’s a double-edged sword, right?), but I’m proud to say I’ve become better at managing life over the past year. Now, I know when to say no, and I value time above all else. I realize now that I cannot operate at high energy levels for weeks on end; in between projects and travel, I reserve a little bit of down time at home in order to recharge. So when I get sick, I know it’s life telling me to slow down and put myself first. It gives me a valid excuse to pause life and feel guiltless when I nap in bed at 2 PM, watch “Seinfeld,” sip strawberry banana smoothies from Smoothie King (or my own smoothies, and drift in and out of a Nyquil haze. (Yes, this is my modus operandi when I’m sick with the cold/flu.)

It also helps to have a little humor. I try to make it an annual tradition to watch Elf every Christmas, in addition to Love Actually (perhaps my favorite holiday movie), and A Charlie Brown Christmas (for nostalgia’s sake). Every year, I also bake my much requested Christmas cookies with cranberry, pistachio, and white chocolate (sorry, the recipe’s a secret!) and gingerbread cookies. I eat and exchange gifts with family. We make edible gifts for our friends—one year, it was strawberry cranberry jam, another year it was pumpkin nut bread, last year it was black garlic, and I won’t give away this year’s present yet since we haven’t distributed them. When I was in my teens, I attended Midnight Mass. Now I’ll go to service on Christmas Eve. We usually trim the tree (but I ran out of time and energy this year).

What holiday traditions do you, your family, and friends observe?

Happy holidays from us here at NMO Diaries. May you and yours stay healthy, eat well, and be merry.

22
Dec 2014
POSTED BY Christine
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